New To Board...couple Of Questions!
Posted 14 December 2006 - 03:33 PM
I have been reading the board for about a year. My husband was diagnosed a year ago with limited scleroderma. He started last summer (2005) with what we originally thought was carpel tunnel. His hands were falling asleep at night and in pain. Then last November he started having severe joint pain which followed with Raynaud's around last Thanksgiving. At this point, he has several ulcers on the tips of his fingers. His internal medicine doctor ordered a bunch of blood work which showed the elevated ANA and he was sent to a Rheumatologist the next week where he got his 'official' diagnosis.
He just came back from the Dr. today and they are still trying to see what might work for the Raynaud's. He originally tried Procardia but had a bad reaction to it and had to switch to Cardura with some success. His ulcers did get better. Then the cold weather hit again and the ulcers are back and his hands are blue/purple or white quite often. He tried Nitro Patches when he was out coaching the kids sports this fall but they gave him terrible headaches. Today, she gave him a prescription for Prozac to help with circulation and Cialis to only be used on bad days. Has anyone had any success with either one of these meds? We both were a little surprised by the Prozac. We had heard about the Cialis though.
A couple of other questions..Has anybody had any issues with their gums receeding? He is seeing a gum specialist to see about his gum receeding around a couple of teeth. The Dr. thought it could be related to the scleroderma.
Also, for those of you that have limited scleroderma...How often do you have a PFT? He had one last year and thought she was going to order another one today but did not.
Overall, he is in a lot of pain but takes it in stride most days. He is still able to work which helps keeps his mind off of things. He is also on Protonix and baby aspirin. He has gastro issues from time to time.
Thanks for listening and any input you can provide.
Posted 14 December 2006 - 04:12 PM
Welcome to Sclero Forums! We have many people here who will pitch in to help answer your questions. I just want to say "hello" and I'm glad you're posting, after all this time reading the posts.
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Posted 14 December 2006 - 10:35 PM
I am sorry to hear about your husband's sclero. I was also diagnosed 1 year ago with limited sclero. like your husband , my raynaud's and fingertip ulcers have made colder months a huge challenge. going to the grocery store might as well be an expedition to Everest. I was on a calcium channel blocker (like procardia) for a while and it helped but once an ulcer took hold, it wouldn't speed the healing process. finally my rheumatologist put me on viagra 1-2 times a day. same thing as cialis. it seems to be helping the one ulcer that hasn't quite healed yet. no one can describe how painful these are to someone who has never had an ulcer before. it is like deep bone pain that radiates to your heart. and this is 24-7. don't even think about hitting the tip of that finger on any hard surface! ya'll that have had these know what I am talking about. I also use nitroglycerin cream (not too much with the viagra). I also have developed ( in past 12 months or so) mild gum recession in a very healthy mouth. my dentist is puzzled because my gums are healthy (no gingivitis) and my teeth are tartar free. I have always had a dental cleaning, checkup , x-rays at least once a year and use a soft toothbrush so not to cause mechanical gum irritation. when I had my yearly checkup last year , my dentist was alarmed to see root resorption of my incisors (front teeth). he couldn't understand why this would suddenly happen. I do however. my theory is the lack of bloodflow to the capillaries that nourish the gums and vacsular beds of the toothroots. just like the nailbeds and fingertips. I also had an echo and pft a year ago. was ok. my rheumatologist didn't say anything about a repeat test this year though. I am puzzled about this. she did say, however, that since I didn't have pulm. hypertension when I was diagnosed, that I prob. wouldn't develop this later. she has only seen 12 other sclero cases. be careful with aspirin . if GI symptoms progress in your husband, he may have problems with GI bleeding from ulcers. I take celebrex for pain and it really helps. many of the popular anti-depressants have an energizing effect as well as lifting the mood. this is why a lot of rheumys want to put us on these. and we are often so very tired. and depressed. I tried cymbalta for a few months but gave it up . it just made me feel weird. hope some of this helps.
Posted 15 December 2006 - 01:35 AM
Posted 15 December 2006 - 02:42 AM
Welcome to the board! I am so sorry to hear of your husbands diagnosis. I was taking viagra and it works great but it did give me really bad headaches and make me tired. I stopped taking it for the summer and so far it has been really mild here in the northeast east so I haven't been taking it at all. We did have a cold spell in November for a few days and I took one pill but that was it. It does heal ulcers that I can confirm.
I have ILD so I have pft's every three months. I guess it would be up to the dr as when to order them.
We are all here to support you and answer your questions. Please keep posting!
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Posted 15 December 2006 - 03:26 AM
Posted 15 December 2006 - 03:46 AM
Welcome! I'm so glad you decided to join us after reading for a while. I did the same as you and was so glad when I finally joined. I'm sorry that your husband has been diagnosed with limited sclero and is having problems with ulcers. It looks like you are getting some good information from people that have had ulcers. I've been lucky and have managed to avoid them. We do have an information page on Digital Ulcer treatments as well as Raynaud's treatments that you might want to take a look at. Lisa mentioned that she takes Viagra that has worked for her. That's the same as Cialis and can be found under Sildanafil on both of these pages.
I have diffuse so I get a PFT every 6 months and now that I have pulmonary hypertension it's been moved up to every 3 months. In fact, I get one today.
Again welcome. Please let us know how you hubby is doing and do not hesitate to post whenever you need information or just a big hug.
Hugs to you both,
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Posted 15 December 2006 - 04:13 AM
Welcome to the forums! I am glad you found us and decided to join, but so sorry it is due to your husband's diagnosis. It looks like many others have chimed in and provided some answers to your questions. I also see that Janey gave you some great links to read. I hope all of this information is helpful. I also hope that you will come here and post often and let us know how you and your husband are doing.
Posted 15 December 2006 - 06:13 AM
Welcome to the sclero forums! I'm really sorry it's due to your husband being ill however.
Looks like you've received a lot of good advice already, so I wanted to just give you a big warm welcome!!
Posted 15 December 2006 - 06:16 AM
I have had to have several gum surgeries. I don't have a definite diagnosis yet. At one point I was weaklly positive for Sjogren's which causes dry mouth. My gums are receding, but I have never heard that it had anything to do with Scleroderma or Sjogren's. I am unable to take medication for my Raynaud's because most of the medicine causes the blood pressure to lower and mine is already 80/60. I have lesions in my stomach that spontaneously bleed. I am on 3 different medicines for that to keep me from becoming anemic again. Best of luck with your husband!
Posted 15 December 2006 - 07:20 AM
Like the others have said, I'm sorry that your husband has sclero, but we're glad there's a place both of you can come to for info and support. As far as meds go, I don't take any for my Raynaud's because it generally isn't as bad as many cases, and so far I've had only one real attack with the frostbitten skin on the hands and feet. My husband got me a bunch of those warm "magic" gloves, and during the winter I need to have them on even while sleeping. Remind him not to get anything out of the fridge without potholders or gloves, even if it's just grabbing something quickly, since that can set it off immediately too! Ok, I'm a slow learner (lol), but have learned to behave myself and take precautions like that. Silk is one of the best things to keep heat from escaping, and if you ever happen to find any gloves made from llama wool, they insulate 2x better than lambs wool. They're also amazingly soft, much like angora, so they don't irritate the skin. Provided he doesn't have allergies, I should add!
Receding gums is a problem around certain teeth, and last year I noticed purplish areas on the gums near those teeth. Since that can also be a sign of cancer (along with other symptoms), I was first re-checked for that, then the doctor said most likely it's sclero. It became official just a week ago since other symptoms worsened or began to appear over the past couple of months. The only thing that I can do is stay in contact with the dentist to check for further problems, but as long as the root of the tooth is intact and there's no infection, they're not too concerned yet. Welcome again to the board, and hope you find the answers you need, along with support along the way!
Best wishes to you and your husband,
Posted 15 December 2006 - 03:13 PM
Scleroderma is such a strange disease. It affects us all so differently. I was diagnosed in August. I haven't noticed receding gums but my mouth has been drier and as a result the plaque buildup on my teeth has increased. I now floss everyday, my top teeth twice and maybe that's why they're not receding - yet?
I got a pft and CAT scan in September and I'm getting another set done in February. I have lung involvement and if your hubby isn't showing symptoms of lung involvement perhaps your rheumatologist doesn't think its necessary. Who knows though...
Take care you and hubby both!
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 16 December 2006 - 03:03 AM
I can't answer any of your questions other then to say that I have Limited with skin involvement up my whole arms and that I was told I need a PFT every year due to PH, but then I had a double ( left and right side) heart cath and found out I do not have PH, I have some big words meaning that the left side of my heart is getting stiff. I am not sure now if I will need another PFT. I take BP meds and have not heard anythng else about it in a month or so. I also have Dermatomyosoitis so for me its hard tt say that one is causing what sxs.
I wish your husband good health and you a huge hug for being a loving wife to look to fine answeres for your questions.
If Life hands you lemons, make lemonade.
Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.
Posted 16 December 2006 - 04:15 AM
Another question...do any of you have siblings that have autoimmune type diseases. My husband's brother has antiphosopholipid syndrome which is an autoimmune disease. Many times this disorder is found with lupus but he doesn't not have lupus. It has caused 2 strokes by the age of 36. (Luckily fairly mild without much damage). I always found this interesting...I don't think they do!
Thanks again for your words of support and I will post when I can..I am in school full time and we have 3 kids that are already involved in way too much:)