Question:

Hi Danielle, While I am much, much older than you, I have linear morphea SD also. I was diagnosed about eight years ago. The first two or three yrs. were the most difficult mainly because I was not well informed. I found that the more information I gathered the better I felt. While I realize this disease is individualized in terms of no two persons have exactly the same symptoms, if you would like to compare notes I would be happy to share my experiences with you privately or here on the NG forum. Don’t know of any groups for just linear morphea have been formed, but there are several on Yahoo for SD of all types. Warm regards, Bobbie R. – Hide quoted text — Show quoted text -> hi, my name is danielle di riscio, i’m 22 from nz & have linear morphea > scleroderma. > was wondering if anyone knows about the prevalence of this particular > type of scleroderma, and whether there are any groups in nz for people > with this. if not, i was thinking of starting one…

Response:

hi, my name is danielle di riscio, i’m 22 from nz & have linear morphea scleroderma. was wondering if anyone knows about the prevalence of this particular type of scleroderma, and whether there are any groups in nz for people with this. if not, i was thinking of starting one…

Response:

Prevalence of all morphea in the US is 2.7 per 100,000 population according to this – http://tinyurl.com/7rkr9    That would be about 8000 people in the US.  Seems low to me. Contact the local Arthritis Association or Society to see if they know of any groups.  They might also help you form one. Amie – Hide quoted text — Show quoted text -frisc…@gmail.com wrote: >hi, my name is danielle di riscio, i’m 22 from nz & have linear morphea >scleroderma. >was wondering if anyone knows about the prevalence of this particular >type of scleroderma, and whether there are any groups in nz for people >with this. if not, i was thinking of starting one…

Response:

Question:

Shelley, I don’t have PBC, but I have had the kidney/blood pressure problems.  Are you on an ACE inhibitor for your BP?  My BP has wildly fluctuated ever since kidney complications, and I’ve even take ACE and ARB together to bring it down.  I’m now on the ARB (along with calcium channel blockers) exclusively, but still had a fluctuation in the last few weeks that forced my dosage to double. Amie – Hide quoted text — Show quoted text -shelley.gio…@btinternet.com wrote: >Hi all, >Just wanted you to know that in order to keep my slceroderma from being >lonely, I have just been diagnosed with primary biliary cirrhosis as >well. Ive still got very high blood pressure despite having lots of >pills to get it under control and have been warned that i am at risk of >a scleroderma crisis. Has anyone else in the group got these three >delightful ingredients, if so would like to hear how they have got on, >also welcome any other comments regarding the links to these deseases. >As usual not a lot of information was provided from the local hospital >and as knowledge is power, thought I would return to the site that gave >me such helpful information when i first found out about the >scleroderma. >Many thanks for reading this

Response:

shelley.gio…@btinternet.com wrote: > Hi all, > Just wanted you to know that in order to keep my slceroderma from > being lonely, I have just been diagnosed with primary biliary > cirrhosis as well. Ive still got very high blood pressure despite > having lots of pills to get it under control and have been warned > that i am at risk of a scleroderma crisis. Has anyone else in the > group got these three delightful ingredients, if so would like to > hear how they have got on, also welcome any other comments regarding > the links to these deseases. As usual not a lot of information was > provided from the local hospital and as knowledge is power, thought I > would return to the site that gave me such helpful information when i > first found out about the scleroderma. > Many thanks for reading this

Hi Shelly, that’s no good. When it comes to disease, there should be a "Only one to a customer" rule. I’ve been having some BP problems too lately, but I think I’ve discovered they are self-induced. Too much coffee. Good luck to you! dave — A person who won’t read has no advantage over one who can’t read. -Mark Twain

Response:

Hello Shelley and everyone 1 I do have Scleroderma and high blood pressure along with many other problems that are now surfacing, I guess like you said, to keep the Scleroderma company. I do not have primary biliary cirrhosis. I just wanted to address the high blood pressure and what I have done to get it lowered after many years. First off I take my own readings 3 times a day and I record it on a chart that my son made me and I do it from Wed. to Tues. which is a week. When I visit my doctor I take the chart along to let him see what it is doing and by doing this the doctor can see what the readings are for the home monitoring. I also have restricted my salt content and started eating fruits and veggies high in potassium. I also purchased a book which is called Reversing Hypertension-by Julian Whitaker, M.D., this was very helpful in me reaching my goal which was to either get off the meds or reduced the meds. and to help ward off kidney problems. I succeeded in reducing the medication. As in January 2005 I was on 280 mg. of BP meds and as of today I am on just 95 mg. of meds for BP. As of my last doctors appointment in June my BP in the doctor’s office was 120/75. In January it was 160/75. I also found if I do not watch what I eat the BP goes way up. Just last night we had crabs steamed for supper and the last reading of my BP was 137/80. Dave yes the coffee will do it especially if it was not decaf. Doris "Dave Wilcher" <davewilc…@gmail.com> wrote in message

news:qUJOe.43704$gB.20607@tornado.ohiordc.rr.com… – Hide quoted text — Show quoted text -> shelley.gio…@btinternet.com wrote: >> Hi all, >> Just wanted you to know that in order to keep my slceroderma from >> being lonely, I have just been diagnosed with primary biliary >> cirrhosis as well. Ive still got very high blood pressure despite >> having lots of pills to get it under control and have been warned >> that i am at risk of a scleroderma crisis. Has anyone else in the >> group got these three delightful ingredients, if so would like to >> hear how they have got on, also welcome any other comments regarding >> the links to these deseases. As usual not a lot of information was >> provided from the local hospital and as knowledge is power, thought I >> would return to the site that gave me such helpful information when i >> first found out about the scleroderma. >> Many thanks for reading this > Hi Shelly, that’s no good. When it comes to disease, there should be a > "Only one to a customer" rule. > I’ve been having some BP problems too lately, but I think I’ve > discovered they are self-induced. Too much coffee. > Good luck to you! > dave > — > A person who won’t read has no advantage over one who can’t read. > -Mark Twain

Response:

Hi all, Just wanted you to know that in order to keep my slceroderma from being lonely, I have just been diagnosed with primary biliary cirrhosis as well. Ive still got very high blood pressure despite having lots of pills to get it under control and have been warned that i am at risk of a scleroderma crisis. Has anyone else in the group got these three delightful ingredients, if so would like to hear how they have got on, also welcome any other comments regarding the links to these deseases. As usual not a lot of information was provided from the local hospital and as knowledge is power, thought I would return to the site that gave me such helpful information when i first found out about the scleroderma. Many thanks for reading this

Response:

Question:

IBS is a pain in the rear in more than one way. Up all night has become the norm in my life. I would love to say I can sleep all day but thats not the case either. I cant close my eyes to fall asleep. I am sorry this side effect of sd has gotten you already. Some of us who have sd dont go through this. Yet alot of us do. One of sd’s little quirks I suppose. Depression also has become a major factor or known factor to us with sd. Another quirk? I have had enough and am fighting back with both fist clenched! Colleen – Hide quoted text — Show quoted text -Cindy wrote: > Hi everyone. I had to catch up again on a week’s worth of postings here- > Thanks for all the great talk and info being done. I’ve been too busy to get > near the computer and my hubby’s been on a lot checking Star wars site. I > can relate to the sleep talk. I usually seem to sleep but never feel rested. > I wake up feeling the same as when I went to bed. The past 3 weeks I can > fall asleep but wake up a billion times through the night. I hate to hear it > may stay. Sorry to hear of you who are up so much. > Also, depression. I feel it a lot and wondered if others did. Oddly , I feel > better to hear others with sd talk of it too. I’ve also been an emotional > seesaw the past few months. My hubby never knows when I’ll be giddy or in > tears. My pillows collected some good salty tears recently, it sure does > relieve the frustration and tension. >  At least my symptoms aren’t painful ( well, ibs is a pain ) , just > frustrating. > How about some more yummy recipe ideas? I fight to keep on the weight that I > have and appetite is mostly nil ( except for maybe chips). Boy, I can run on > at times, goodnight to all – I hope. Cindy

Response:

Welcome back Cindy!           Sometimes I cry, sometimes I think of (only think) about throwing dishes,etc.  It is a struggle but we are not alone!!.  Susan – Hide quoted text — Show quoted text -Cindy wrote: > Hi everyone. I had to catch up again on a week’s worth of postings here- > Thanks for all the great talk and info being done. I’ve been too busy to get > near the computer and my hubby’s been on a lot checking Star wars site. I > can relate to the sleep talk. I usually seem to sleep but never feel rested. > I wake up feeling the same as when I went to bed. The past 3 weeks I can > fall asleep but wake up a billion times through the night. I hate to hear it > may stay. Sorry to hear of you who are up so much. > Also, depression. I feel it a lot and wondered if others did. Oddly , I feel > better to hear others with sd talk of it too. I’ve also been an emotional > seesaw the past few months. My hubby never knows when I’ll be giddy or in > tears. My pillows collected some good salty tears recently, it sure does > relieve the frustration and tension. >  At least my symptoms aren’t painful ( well, ibs is a pain ) , just > frustrating. > How about some more yummy recipe ideas? I fight to keep on the weight that I > have and appetite is mostly nil ( except for maybe chips). Boy, I can run on > at times, goodnight to all – I hope. Cindy

Response:

My readings are very similar to my docs, and you’re right about scleroderma renal crisis.  My BP went from normal on a Monday to 213/131 on the following Saturday.  The key is getting proper treatment (ACE inhibitors to control the BP) very soon thereafter. The Scleroderma Foundation has a great article about SRC at http://www.scleroderma.org/medical/renal_articles/korn_2003_1.shtm Amie – Hide quoted text — Show quoted text -David Segall wrote: >Amelia Yaussy <am…@blackmule.com> wrote: >>David,  I’ve used the wrist one for 3 years and it is just fine.  The >>key is to have your arm in the right position.   Even though it’s easy >>to use, read the manual. >>Amie >How does the reading compare with the one your doctor gets? Ours, an >Omron arm cuff unit, was a couple of units higher for both Systolic >and Diastolic. We have not found the arm cuff difficult to use but >there may be some physical disabilities that would make the wrist cuff >easier. Not that it matters much. If you are in the middle of a >scleroderma hypertension crisis there will be a massive rise today >compared to yesterday and an exact measurement is not needed. >>David Segall wrote: >>>I’m surprised that someone with scleroderma does not have a blood >>>pressure monitor. The main cause of death in the early stages of the >>>disease is scleroderma hypertension and it can be detected early >>>enough to be cured with regular blood pressure monitoring. Daily is >>>more than enough but is harmless and makes it routine. Even if you >>>neurotically measure your blood pressure every half hour it won’t kill >>>you or cause irreversible kidney damage and I’m sure you will quickly >>>cure yourself of the habit. Anyway, it would be better for your blood >>>pressure and your health in general if you felt "safe". >>>If you decide to get one, we have had good experience with an Omron >>>unit – it has not missed a beat in three years. Get one with what >>>they call Intellisense. It means that you do not have calibrate it for >>>each user. Even if you don’t have another regular user you will be >>>surprised by the number of people who are curious about their own >>>measurement – it’s great dinner party entertainment. The arm cuff is >>>supposed to be more accurate than the wrist cuff but the latter is >>>supposed to be easier to use. Perhaps others can offer additional >>>advice about what to buy.

Response:

- Hide quoted text — Show quoted text -"shelleyg" <shelley.gio…@btinternet.com> wrote: >Hi again, >Thanks for your replys. Yes i think I should look at my diet, I am not >the best at eating healthy things, never have been, I am not overwieght >and do find it uncomfortable to eat a normal meal, I usually feel six >months pregnant and would love to just put a pin in my stomache and >watch it deflate, not sure if this is the sclero or this liver desease >or a side effect of new medication. >Amelia you asked if i was on ACE inhibitors, yes i am, they have just >managed to find one that I didnt have a bad reaction to and are >introducing it slowly, I also take beta blockers and angiotensin 11 >receptor antagonists plus water tablets. The last time i saw my >consultant my BP was 240/130 and they admitted me for a week to get it >down. Trouble is they give me new pills or up the dosage of ones I am >already taking and yes, like magic it comes down very quickly, the >trouble is after a few weeks it starts to get high again. It is like my >body gets immune to them, now I would of thought that my immune system >would be too tired to fight against a few pills as its too busy >fighting me!!!!. You also mentioned that you were on a very high dose >of the pills you were prescribed, did you have a similar experience >when they were trying to get it under contol? >I am not measuring my blood pressure at home, the specialist I saw a >few weeks ago suggested i did but my consultant said to my GP that she >thought this may not be practicle and could lead me too become >nuerotic!! so I have to go to my local surgery instead but only once a >month..I’m not sure if I feel that "safe" with a check once every four >weeks though. Anyway, once again you have been a real help to me, cant >thank you all enough >shelley

I’m surprised that someone with scleroderma does not have a blood pressure monitor. The main cause of death in the early stages of the disease is scleroderma hypertension and it can be detected early enough to be cured with regular blood pressure monitoring. Daily is more than enough but is harmless and makes it routine. Even if you neurotically measure your blood pressure every half hour it won’t kill you or cause irreversible kidney damage and I’m sure you will quickly cure yourself of the habit. Anyway, it would be better for your blood pressure and your health in general if you felt "safe". If you decide to get one, we have had good experience with an Omron unit – it has not missed a beat in three years. Get one with what they call Intellisense. It means that you do not have calibrate it for each user. Even if you don’t have another regular user you will be surprised by the number of people who are curious about their own measurement – it’s great dinner party entertainment. The arm cuff is supposed to be more accurate than the wrist cuff but the latter is supposed to be easier to use. Perhaps others can offer additional advice about what to buy.

Response:

Hi everyone. I had to catch up again on a week’s worth of postings here- Thanks for all the great talk and info being done. I’ve been too busy to get near the computer and my hubby’s been on a lot checking Star wars site. I can relate to the sleep talk. I usually seem to sleep but never feel rested. I wake up feeling the same as when I went to bed. The past 3 weeks I can fall asleep but wake up a billion times through the night. I hate to hear it may stay. Sorry to hear of you who are up so much. Also, depression. I feel it a lot and wondered if others did. Oddly , I feel better to hear others with sd talk of it too. I’ve also been an emotional seesaw the past few months. My hubby never knows when I’ll be giddy or in tears. My pillows collected some good salty tears recently, it sure does relieve the frustration and tension.  At least my symptoms aren’t painful ( well, ibs is a pain ) , just frustrating. How about some more yummy recipe ideas? I fight to keep on the weight that I have and appetite is mostly nil ( except for maybe chips). Boy, I can run on at times, goodnight to all – I hope. Cindy

Response:

Shelley, I think our experience may be similar with the BP.  Mine has gone up (150s/100s), with a subsequent increase in medication, and then crashed (80s/60s) more times than I can count.  I have backed off to as little as no medication, and slowly added it as the BP rose.  I’ve spent weeks and months with it being stable, then it starts to take off again.  I agree with your GP – it can make you neurotic!  I try to take it at least once a week just to "check in" on it, then will take it more often when I’m altering meds.  So far, no one has en explanation for this and my scleroderma specialist isn’t worried as long as I keep the BP "under control."  I guess trying to keep it under control counts.   BTW, my ARB is your Angiotensin 2 Receptor inhibitor (Blocker) and mine also has some diuretic in it.  So many drugs and so little stability… I’ve heard others describe the same after-dinner feeling, so it’s probably scleroderma-related.  Hope you get some relief from all of these complications SOON. Amie – Hide quoted text — Show quoted text -shelleyg wrote: >Hi again, >Thanks for your replys. Yes i think I should look at my diet, I am not >the best at eating healthy things, never have been, I am not overwieght >and do find it uncomfortable to eat a normal meal, I usually feel six >months pregnant and would love to just put a pin in my stomache and >watch it deflate, not sure if this is the sclero or this liver desease >or a side effect of new medication. >Amelia you asked if i was on ACE inhibitors, yes i am, they have just >managed to find one that I didnt have a bad reaction to and are >introducing it slowly, I also take beta blockers and angiotensin 11 >receptor antagonists plus water tablets. The last time i saw my >consultant my BP was 240/130 and they admitted me for a week to get it >down. Trouble is they give me new pills or up the dosage of ones I am >already taking and yes, like magic it comes down very quickly, the >trouble is after a few weeks it starts to get high again. It is like my >body gets immune to them, now I would of thought that my immune system >would be too tired to fight against a few pills as its too busy >fighting me!!!!. You also mentioned that you were on a very high dose >of the pills you were prescribed, did you have a similar experience >when they were trying to get it under contol? >I am not measuring my blood pressure at home, the specialist I saw a >few weeks ago suggested i did but my consultant said to my GP that she >thought this may not be practicle and could lead me too become >nuerotic!! so I have to go to my local surgery instead but only once a >month..I’m not sure if I feel that "safe" with a check once every four >weeks though. Anyway, once again you have been a real help to me, cant >thank you all enough >shelley

Response:

Amelia Yaussy <am…@blackmule.com> wrote: >My readings are very similar to my docs, and you’re right about >scleroderma renal crisis.  My BP went from normal on a Monday to 213/131 >on the following Saturday.

Thanks Amie. Your post is the first time I have seen an actual blood pressure reading from a scleroderma renal crisis. The article you cite and my wife’s rheumatologist did not provide any numbers. – Hide quoted text — Show quoted text ->The key is getting proper treatment (ACE >inhibitors to control the BP) very soon thereafter. >The Scleroderma Foundation has a great article about SRC at >http://www.scleroderma.org/medical/renal_articles/korn_2003_1.shtm >Amie >David Segall wrote: >>Amelia Yaussy <am…@blackmule.com> wrote: >>>David,  I’ve used the wrist one for 3 years and it is just fine.  The >>>key is to have your arm in the right position.   Even though it’s easy >>>to use, read the manual. >>>Amie >>How does the reading compare with the one your doctor gets? Ours, an >>Omron arm cuff unit, was a couple of units higher for both Systolic >>and Diastolic. We have not found the arm cuff difficult to use but >>there may be some physical disabilities that would make the wrist cuff >>easier. Not that it matters much. If you are in the middle of a >>scleroderma hypertension crisis there will be a massive rise today >>compared to yesterday and an exact measurement is not needed. >>>David Segall wrote: >>>>I’m surprised that someone with scleroderma does not have a blood >>>>pressure monitor. The main cause of death in the early stages of the >>>>disease is scleroderma hypertension and it can be detected early >>>>enough to be cured with regular blood pressure monitoring. Daily is >>>>more than enough but is harmless and makes it routine. Even if you >>>>neurotically measure your blood pressure every half hour it won’t kill >>>>you or cause irreversible kidney damage and I’m sure you will quickly >>>>cure yourself of the habit. Anyway, it would be better for your blood >>>>pressure and your health in general if you felt "safe". >>>>If you decide to get one, we have had good experience with an Omron >>>>unit – it has not missed a beat in three years. Get one with what >>>>they call Intellisense. It means that you do not have calibrate it for >>>>each user. Even if you don’t have another regular user you will be >>>>surprised by the number of people who are curious about their own >>>>measurement – it’s great dinner party entertainment. The arm cuff is >>>>supposed to be more accurate than the wrist cuff but the latter is >>>>supposed to be easier to use. Perhaps others can offer additional >>>>advice about what to buy.

Response:

David,  I’ve used the wrist one for 3 years and it is just fine.  The key is to have your arm in the right position.   Even though it’s easy to use, read the manual. Amie – Hide quoted text — Show quoted text -David Segall wrote: >I’m surprised that someone with scleroderma does not have a blood >pressure monitor. The main cause of death in the early stages of the >disease is scleroderma hypertension and it can be detected early >enough to be cured with regular blood pressure monitoring. Daily is >more than enough but is harmless and makes it routine. Even if you >neurotically measure your blood pressure every half hour it won’t kill >you or cause irreversible kidney damage and I’m sure you will quickly >cure yourself of the habit. Anyway, it would be better for your blood >pressure and your health in general if you felt "safe". >If you decide to get one, we have had good experience with an Omron >unit – it has not missed a beat in three years. Get one with what >they call Intellisense. It means that you do not have calibrate it for >each user. Even if you don’t have another regular user you will be >surprised by the number of people who are curious about their own >measurement – it’s great dinner party entertainment. The arm cuff is >supposed to be more accurate than the wrist cuff but the latter is >supposed to be easier to use. Perhaps others can offer additional >advice about what to buy.

Response:

Hi again, Thanks for your replys. Yes i think I should look at my diet, I am not the best at eating healthy things, never have been, I am not overwieght and do find it uncomfortable to eat a normal meal, I usually feel six months pregnant and would love to just put a pin in my stomache and watch it deflate, not sure if this is the sclero or this liver desease or a side effect of new medication. Amelia you asked if i was on ACE inhibitors, yes i am, they have just managed to find one that I didnt have a bad reaction to and are introducing it slowly, I also take beta blockers and angiotensin 11 receptor antagonists plus water tablets. The last time i saw my consultant my BP was 240/130 and they admitted me for a week to get it down. Trouble is they give me new pills or up the dosage of ones I am already taking and yes, like magic it comes down very quickly, the trouble is after a few weeks it starts to get high again. It is like my body gets immune to them, now I would of thought that my immune system would be too tired to fight against a few pills as its too busy fighting me!!!!. You also mentioned that you were on a very high dose of the pills you were prescribed, did you have a similar experience when they were trying to get it under contol? I am not measuring my blood pressure at home, the specialist I saw a few weeks ago suggested i did but my consultant said to my GP that she thought this may not be practicle and could lead me too become nuerotic!! so I have to go to my local surgery instead but only once a month..I’m not sure if I feel that "safe" with a check once every four weeks though. Anyway, once again you have been a real help to me, cant thank you all enough shelley

Response:

Amelia Yaussy <am…@blackmule.com> wrote: >David,  I’ve used the wrist one for 3 years and it is just fine.  The >key is to have your arm in the right position.   Even though it’s easy >to use, read the manual. >Amie

How does the reading compare with the one your doctor gets? Ours, an Omron arm cuff unit, was a couple of units higher for both Systolic and Diastolic. We have not found the arm cuff difficult to use but there may be some physical disabilities that would make the wrist cuff easier. Not that it matters much. If you are in the middle of a scleroderma hypertension crisis there will be a massive rise today compared to yesterday and an exact measurement is not needed. – Hide quoted text — Show quoted text ->David Segall wrote: >>I’m surprised that someone with scleroderma does not have a blood >>pressure monitor. The main cause of death in the early stages of the >>disease is scleroderma hypertension and it can be detected early >>enough to be cured with regular blood pressure monitoring. Daily is >>more than enough but is harmless and makes it routine. Even if you >>neurotically measure your blood pressure every half hour it won’t kill >>you or cause irreversible kidney damage and I’m sure you will quickly >>cure yourself of the habit. Anyway, it would be better for your blood >>pressure and your health in general if you felt "safe". >>If you decide to get one, we have had good experience with an Omron >>unit – it has not missed a beat in three years. Get one with what >>they call Intellisense. It means that you do not have calibrate it for >>each user. Even if you don’t have another regular user you will be >>surprised by the number of people who are curious about their own >>measurement – it’s great dinner party entertainment. The arm cuff is >>supposed to be more accurate than the wrist cuff but the latter is >>supposed to be easier to use. Perhaps others can offer additional >>advice about what to buy.

Response:

Question:

All the information on morphea treatment I have read about on the internet say it’s all in the test phase and nothing seems to work. This information all seems to be a few years old and am curious if anything new has come out?  I read an article about UVA-1 treatment and it seemed promising – has there been any case studies done on this?

Response:

Here’s a study published this year on using low-dose methotrexate and prednisone: http://tinyurl.com/avru8 This is a review of articles about UVA1 and PUVA treatment for morphea and other scleroderma-like conditions: http://tinyurl.com/89d66 These caught my eye in the morphea article at eMedicine:     * The use of low-dose UV-A phototherapy has produced marked clinical       improvement of treated morphea lesions. PUVA bath       photochemotherapy has also been reported to be helpful in patients       with plaque-type or linear morphea, and PUVA is considered to be       one of the best treatment options available.     * Severe cases of morphea with elevated ANA and other autoantibody       levels have been improved with the use of plasmapheresis. http://www.emedicine.com/derm/topic272.htm I found these by searching "morphea uva1 puva" on Yahoo and "morphea" on Pubmed Medline.  I’m sure there’s more! Amie – Hide quoted text — Show quoted text -uts…@aol.com wrote: >All the information on morphea treatment I have read about on the >internet say it’s all in the test phase and nothing seems to work. >This information all seems to be a few years old and am curious if >anything new has come out?  I read an article about UVA-1 treatment and >it seemed promising – has there been any case studies done on this?

Response:

Question:

Boo to you, too!  How are you doing? Amie – Hide quoted text — Show quoted text -Barbara R wrote: >Is it just me or have others missed any of their daily SD digests? I belong >to about five different Yahoo support digests and did not get any today. >Would also like to say boo to all that post on this newsgroup. I check it >every day and am delighted to see a few dedicated posters are back. It has >been very quiet for far too long. >Warm regards to all. Bobbie R.

Response:

Howdy Doris, So sorry to hear you are having a hard time with your hip and leg. Maybe the new prescription will ease your pain. My leg and hip ache off and on. One Doctor said I had something called Piriformis Syndrome, a fancy name for a flare-up of the siatic nerve. I did Physical Therepy for awhile but discovered on my own a couple of stretch exercises that help and I try not to sit at the computer for too long at a time. I take a Naproxin ocassionally to help with the pain. I also try to get out and walk as often as I can. I know walking is not easy for you! Are you still using your walker? I hope the new pills your doc prescribed will ease your pain. Warm regards, Bobbie R.

Response:

Hi Barb. The new prescription has started to ease the pain somewhat, but of course I am having side effects that are not listed on the prescription list. I just sent an e-mail to the doctor asking if I could split the pills half and just take 1/2 at a time and see what happens. Go figure. Yes walking with my rolling walker my walking has improved. I think these ups and downs are a way of telling me to slow down. I tried to get out as much as I can to walk. Doris "Barbara R" <bah…@reachone.com> wrote in message

news:1194cm2f4lspsae@corp.supernews.com… – Hide quoted text — Show quoted text -> Howdy Doris, > So sorry to hear you are having a hard time with your hip and leg. Maybe > the new prescription will ease your pain. My leg and hip ache off and on. > One Doctor said I had something called Piriformis Syndrome, a fancy name > for a flare-up of the siatic nerve. I did Physical Therepy for awhile but > discovered on my own a couple of stretch exercises that help and I try not > to sit at the computer for too long at a time. I take a Naproxin > ocassionally to help with the pain. I also try to get out and walk as > often as I can. I know walking is not easy for you! Are you still using > your walker? > I hope the new pills your doc prescribed will ease your pain. > Warm regards, Bobbie R.

Response:

<Amie wrote,     " Boo to you, too!  How are you doing? "> Hi Amie,   I’m doing pretty good, thanks for asking. Sorry to read that you have been having a bad time lately. You are such a trooper! Hope the summer brings you some relief. If nothing else, the warmth of the sun can perform small miracles.  I also noticed that you won an award not too long ago from the Scleroderma Foundation. Congratulations! Your knowledge about the ups and downs of SD never ceases to amaze me! Half of the battle of any disease is being fully informed as you well know. Have a good one!  Warm regards, Bobbie R.

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Is it just me or have others missed any of their daily SD digests? I belong to about five different Yahoo support digests and did not get any today. Would also like to say boo to all that post on this newsgroup. I check it every day and am delighted to see a few dedicated posters are back. It has been very quiet for far too long. Warm regards to all. Bobbie R.

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Boo to you Barbara-so glad to see your post. I belong to several digests also on Yahoo and I do received them. I belong to SDWorld and the one that Amelia Yaussy has. I never can think of the name for it. I had my docs appointment today for my problem with my hip and leg and got a new prescription and keeping my fingers crossed that I do not have an allergic reaction to it as I am not too lucky when taking inflammatory medicines. Doris "Amelia Yaussy" <am…@blackmule.com> wrote in message

news:KbadnaTXLa1vVAzfRVn-1g@wideopenwest.com… – Hide quoted text — Show quoted text -> Boo to you, too!  How are you doing? Amie > Barbara R wrote: >>Is it just me or have others missed any of their daily SD digests? I >>belong to about five different Yahoo support digests and did not get any >>today. >>Would also like to say boo to all that post on this newsgroup. I check it >>every day and am delighted to see a few dedicated posters are back. It has >>been very quiet for far too long. >>Warm regards to all. Bobbie R.

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It’s been a long time since I was in your situation but I remember how uncomfortable I was! Baths with sea salt did help relieve it a bit. I think I tried everything on the market from oatmeal to OTC oils and creams! I finally got a RX for Diprolene AF( which is a brand of augmented betamethasone dipropionate* cream 0.05%.) I don’t know what else to recommend. I remember that it was very expensive so perhaps you can get a "trial size" to see if it does any good. Hope this helps a bit. jo nj "L.S. King" <SJK…@mapson.comcast.net> wrote in message

news:EaSdnW2I9Mt-FvffRVn-iA@comcast.com… – Hide quoted text — Show quoted text -> It looks like this ng is about dead, but I know no other place to rant, so > consider this a rant for anyone who can sympathize. > The morphea is spreading on my legs and itching so bad I cannot *stand* > it!! > ~L

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I don’t know much about Morphea, but I can relate to the itching. I hope you get something to help with it. Doris "L.S. King" <SJK…@mapson.comcast.net> wrote in message

news:zq-dnand-sGKc_HfRVn-rw@comcast.com… – Hide quoted text — Show quoted text -> Thanks. Since I see my rheumy tomorrow, I’ll ask if he has any suggestions > and if he think antihistimines would help. He knows more about morphea > than > the dermatologist I saw. > ~L > "Amelia Yaussy" <am…@blackmule.com> wrote in message > news:opSdndr9FLvwmfbfRVn-tA@wideopenwest.com… >> I don’t know about Morphea, but I do know some folks with systemic >> scleroderma get relief from antihistimines.  Check with your doc to see >> which one is best for you. >> Amie >> PS – not dead here, just waiting for the right conversation! >> L.S. King wrote: >> >It looks like this ng is about dead, but I know no other place to rant, > so >> >consider this a rant for anyone who can sympathize. >> >The morphea is spreading on my legs and itching so bad I cannot *stand* > it!! >> >~L

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Thanks. Since I see my rheumy tomorrow, I’ll ask if he has any suggestions and if he think antihistimines would help. He knows more about morphea than the dermatologist I saw. ~L "Amelia Yaussy" <am…@blackmule.com> wrote in message

news:opSdndr9FLvwmfbfRVn-tA@wideopenwest.com… – Hide quoted text — Show quoted text -> I don’t know about Morphea, but I do know some folks with systemic > scleroderma get relief from antihistimines.  Check with your doc to see > which one is best for you. > Amie > PS – not dead here, just waiting for the right conversation! > L.S. King wrote: > >It looks like this ng is about dead, but I know no other place to rant, so > >consider this a rant for anyone who can sympathize. > >The morphea is spreading on my legs and itching so bad I cannot *stand* it!! > >~L

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It looks like this ng is about dead, but I know no other place to rant, so consider this a rant for anyone who can sympathize. The morphea is spreading on my legs and itching so bad I cannot *stand* it!! ~L

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I don’t know about Morphea, but I do know some folks with systemic scleroderma get relief from antihistimines.  Check with your doc to see which one is best for you. Amie PS – not dead here, just waiting for the right conversation! – Hide quoted text — Show quoted text -L.S. King wrote: >It looks like this ng is about dead, but I know no other place to rant, so >consider this a rant for anyone who can sympathize. >The morphea is spreading on my legs and itching so bad I cannot *stand* it!! >~L

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I haven’t been give that prescription (Diprolene AF) yet, but every OTC lotion, cream, and oil makes it worse. Soap is a culprit too. I finally began making my own soaps, salves, butter bars, etc. and they help. But I haven’t had it this bad in a loooong time. I go see my rheumy tomorrow, I’ll ask about the Diprolene AF. Thanks. ~L – Hide quoted text — Show quoted text -"metoo" <je…@home.here> wrote in message news:426ae966_2@nntp2.nac.net… > It’s been a long time since I was in your situation but I remember how > uncomfortable I was! > Baths with sea salt did help relieve it a bit. I think I tried everything on > the market from oatmeal to OTC oils and creams! > I finally got a RX for Diprolene AF( which is a brand of augmented > betamethasone dipropionate* cream 0.05%.) > I don’t know what else to recommend. > I remember that it was very expensive so perhaps you can get a "trial size" > to see if it does any good. > Hope this helps a bit. > jo > nj > "L.S. King" <SJK…@mapson.comcast.net> wrote in message > news:EaSdnW2I9Mt-FvffRVn-iA@comcast.com… > > It looks like this ng is about dead, but I know no other place to rant, so > > consider this a rant for anyone who can sympathize. > > The morphea is spreading on my legs and itching so bad I cannot *stand* > > it!! > > ~L

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I’ve lagged behind on reading rpca and just got caught up. Have just been too busy and too tired to participate a lot, but now I have two whole weeks off from work and plan to only chill out, play bubbels, eat chocolate and generally enjoy myself. Will have more time for my friends on rpca, too. Today was the next to last time of my ’spa’ treatment (for my scleroderma, i.e. thickened skin). It’s been really nice therapy, especially for this time of year, when it is dark and cold outside. The gude snowfalls we got in November have melted away and it’s very very dark. The treatment consists of laying in a hot tub of water for ten minutes, then standing in a solarium-like cabinet while they zap you with UV rays. The time has gradually been increased from c. half a minute to 3

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Hi Barb! The end of Sept. we went to Callicoon, NY at a resort called Villa Roma-(son has a time share). it was great. We discovered a few towns while we were there. One of them Narrowburgs, NY where we discovered a reservoir wrong spelling and that was huge-supplies NY City with their drinking water, we also discovered a covered bridge in Grahamsville, NY, and discovered another reservoir called Roundabout another source of drinking water for NYC. This one was in the Catskills Mountains. The drive was beautiful and the leaves were just turning colors. Also Hortonville which ended  up to be very small, I think if you blinked you would had missed it.This town reminded me of a book by Dr. Suess something about a Horton. LOL While there an online friend visited us from Conn and we showed her what we had discovered. Enough about our trip there is more but don’t want to bore anyone. Doris "Barbara R" <bah…@reachone.com> wrote in message

news:10ngk7o7cga42eb@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Doris, > I feel the same and check in every day to read SD related  posts. It has > been extremely quiet here in the newsgroup. I read the Yahoo digest among > others and was happy to hear you were feeling good enough to enjoy every > minute of your vacations. If memory serves, you took more than one trip, > lucky lady.   Warm regards, Bobbie R. > "Doris" <> wrote in message >> Hi All, >> I always stop by to see if anyone has posted anything relating to >> Scleroderma. like many I do not like the other stuff that is on here. >> DORIS

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Hi Doris, I feel the same and check in every day to read SD related  posts. It has been extremely quiet here in the newsgroup. I read the Yahoo digest among others and was happy to hear you were feeling good enough to enjoy every minute of your vacations. If memory serves, you took more than one trip, lucky lady.   Warm regards, Bobbie R. – Hide quoted text — Show quoted text -"Doris" <> wrote in message > Hi All, > I always stop by to see if anyone has posted anything relating to > Scleroderma. like many I do not like the other stuff that is on here. > DORIS

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Hi All, I always stop by to see if anyone has posted anything relating to Scleroderma. like many I do not like the other stuff that is on here. DORIS

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You’re there, there’s just cross-posting from another newsgroup.  I’m thinking of something clever to say to them now…. – Hide quoted text — Show quoted text -Barbara Reutercrona wrote: >There must be something drastically wrong with my computer. I can’t seem to >log on to the SD support newsgroup. Can some one help?  Bobbie R.

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There must be something drastically wrong with my computer. I can’t seem to log on to the SD support newsgroup. Can some one help?  Bobbie R.

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Amie, maybe if we join forces, "THEY" will get the drift!  Bobbie R.

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Ah, gotcha.  Or, you got me! – Hide quoted text — Show quoted text -Barbara Reutercrona wrote: >Thanks Amie, I knew what I was doing all along. Get the drift? Bobbie R.

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Thanks Amie, I knew what I was doing all along. Get the drift? Bobbie R.

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Question:

The Scleroderma Foundation website www.scleroderma.org has open chat today at 9:30P ET.

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Does anyone have scleroderma that has a hair transplant?  Is there any possible connection here?  Any thoughts would be appreciated. Thanks. "Amelia Yaussy" <am…@blackmule.com> wrote in message

news:vdadnXgtVrA7ASndRVn-uA@wideopenwest.com… – Hide quoted text — Show quoted text -> The Scleroderma Foundation website www.scleroderma.org has open chat > today at 9:30P ET.

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