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I sincerely hope not, at least for a long time.

 

I have to see the rheumatologists at Chichester some time, don't know when yet. I assume fairly soon, I seem to get a very prompt service, i.e. pushing in the queue.

 

He was awful, it didn't help that I wasn't feeling well but it was all so unnecessary

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Hey Peter, you'd think that people could at least be kind if they don't get it and they don't.

 

Consider reporting him, he doesn't have to be touchy feeley , you don't have to put up with him, especially the threat to leave you.

 

I have never had to use transport and never would because I couldn't physically cope with that length of time out.

 

I hope that the viagra works but make sure to phone the hospital if you have problems.

 

I am really sorry to hear about this but can't say I am surprised.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Viagra works a treat, I barely get out of breath going upstairs. It's quite a short lived effect though, hence having 3 a day. My problem is the PAH. I'm not sure how the connective tissue disease is affecting it. The Brompton person I was talking to didn't know either. I'm going to see the lung lady in Chichester in a few weeks so I shall ask her.

I couldn't cope with the trip either, I shall have to think what to do if I have to go there again.

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Fab! So glad to hear that the medication is working!

 

Have a look at the information we have on site about PH, there are various ways in which scleroderma can cause it. The good news is that with early diagnosis and treatment, the prognosis is good.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I went to see the lung consultant at the hospital the other day and told her my muscles and joints are stiff and ache. This is a new thing in the last couple of weeks. She said this was normally treated with steroids and that she really didn't want to start me on steroids, I think it is sclero related.

Also I had a chest xray just before seeing her. The previous one showed voids in my lungs which have got worse. This is like tb but not tb, she thinks non-tuberculous mycobacteria. She is doing more tests. There is a treatment, 2 years on 3 different antibiotics. Apparently there are potential nasty side effects and I need councelling before deciding.

Seems a bit unfair to me!

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Hi Peter,

 

I'm really sorry to hear that you seem to be experiencing more unpleasant symptoms and problems. Having suffered with stiff and aching joints, I can empathise with the discomfort this can cause.

 

We have a medical page on Extrapulmonary Tuberculosis (EPTB), which includes a section on Autoimmunity and Mycobacterium. Unfortunately, a lot of the drugs prescribed do have the downside of nasty side effects; I think it's a question of weighing up the possible benefits of taking the medication, against the potential problems which may develop through their usage.

 

I'm afraid steroids are a case in point; we have a medical page on Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma and having taken them myself for the last seven years, I can safely say that although I thought they were nothing less than a miracle drug when I first took them, now having had just about all the known side effects with them (apart from the renal crisis, which I hope will be indefinitely postponed ! :wink: ) I am very much less ecstatic about them than I was! The worst effect of them is avascular necrosis, which has necessitated my having two total hip replacements. I can understand your lung consultant's reluctance to prescribe them for you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks for that. The links are useful and interesting even though I don't understand a huge amount of what they are saying. I get the general drift which is probably enough.

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Hi Peter,

 

I'm sorry you are having additional complications. If I were you, I'd get a second opinion before jumping straight to steroids for muscle and joint pain, especially when it is of such recent onset. First, look at all your medications to see if that is a potential side effect. A common culprit for that is statins (cholesterol medications) or many other medications with muscle and joint pain as a side effect.

 

It might also be the onset of fibromyalgia, which is very common with scleroderma. Or it could be that you are going through a stressful time, and not sleeping very well, and the fallout from that is aching from head to toe. In any event, since this is new, first look to medication side effects or any recent changes in your lifestyle (such as stress, or perhaps even stopping a regular exercise.)

 

As Jo pointed out, its not the best idea to rush to steroids, especially with scleroderma. See Warnings for Steroids and Scleroderma, because steroids strongly increase the short term risk of developing scleroderma renal crisis (sudden kidney failure).

 

So many other things could be tried first, such as improving sleep, stretching or exercising or warm pool classes, pain medications, massages, antidepressants, muscle relaxers, relaxation or meditation programs....why, the list goes on and on, and most of us use a combination of several if not many things to address muscle and joint pain.

 

You've just had the whole stress of possible lung infection and difficult questions regarding possible treatments added to your plate. That's quite a stressor, too, and probably won't do anything to improve your relaxation and sleep (and thus, it may increase your joint and muscle discomfort.)

 

I'm unable to take any steroids, even apart from scleroderma issues, and have managed widespread and chronic joint and muscle pain for decades without steroids. So, I know it's possible, even though steroids are certainly a very fast shortcut, in the long run, they can be quite troublesome, especially with scleroderma. Such as Jo, who has had to have two hips replaced just in the last year.

 

I also count myself lucky to be unable to take steroids. I'm positive a single dose would have me hooked forever, as it would be a single source for relief (rather than the more complicated steps of sleep evaluations, plus other medications and many lifestyle changes) and I imagine it would be instant, as well. So then I'd spend my remaining days incurring kidney failure and joint replacements....of that, I have little doubt.

 

Pay very close attention when you are being counseled regarding treatment, and take the time you need to make a proper decision. Some things truly are better off not treated, because sometimes the risks of treatment really are worse than the risks of the disease.  Especially as we age, we are more likely to encounter ailments that we are better off trying to just live with, as long as possible, rather than tackle them head-on.  But, you don't hear people talk of these issues much, for as a society we tend to go all-in for any treatment that exists.

 

I myself have chosen to not have some things treated, yet have gone all-in for treatment of other things. It's helped me to ask my doctor, if it was them, or their loved one, would they attempt this treatment, under these same circumstances?  A surprising number of doctors would personally forego treatments that they are still obliged to offer to their patients.

 

I'm sorry, I don't know why I'm going on and on about this.  Except to say, I appreciate that you will be faced with many decisions. Some may have easy answers, some not. Who knows, maybe you could even try the steroids at low dose for a few weeks, just to get the worst of the fires put out, while you work on getting other approaches ready, such as perhaps some good sleeping and pain meds, or enrolling in a warm pool class.  Just be aware to do your best, working with your doctors, to try to avoid relying on high dose or long term steroids for your condition -- if it's reasonable and possible, under the circumstances. 

 

And please bear in mind, none of us, particularly me, are doctors, and we should not be guiding your medical decisions; rather, hopefully just giving some food for thought or to discuss with your experts.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Oh I am not in the slightest stressed, I don't do that. It's a bit annoying being stiff and sore but I can put up with it, it's odd suddenly being 30 years older! You should see me getting up from a chair. I have to do a 6 minute walk test, I can't see that going well.

The mycobacteria sounds worse. The hospital took a lot of blood samples and I'm to have another CT scan shortly. It sounds harder to knock off than actual TB, I think that is 6 months of pills whereas this is 2 years and might not work.

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Hi Peter,

 

It's delightful that you don't stress out over everything. Yes, non-tb mycobacteria can be very hard to treat.  I hope the hospital has some answers for you soon, to help guide your treatment decisions.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Peter

 

Oh boy, you're sure going for it! Never heard of what you have which is quite a feat. Antibiotics can be awful drugs, rather, the effects can be. In 2012 I had cellulitis 3 times in 5 months, needing IV antibiotics twice. I ended up in hospital for about 5 days with an acute kidney injury and when home, spent two weeks in bed. The first week I developed colitis and oh my giddy aunt, was that awful!

 

When it comes to treatment my husband and I consider quality over quantity and make a decision based on that alone. Who want 10 miserable years instead of 5 mediocre ones, no one but the doctor!

 

Hope it works out and sorry pain has joined the party. The best thing to do, I think anyways, is to accept that it's there to stay and all you can do is manage it. Sounds obvious I know but had I accepted the pain and its side effect of being unable to walk, I'd have saved myself lots of bother especially as I've ended up in a wheelchair anyways! Oh and if you need medication to help, I say take it but less is definitely more.

 

Take care and keep us posted.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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