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Joint Pain-- Pred Or Crest?

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#1 Maddy07


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Posted 09 September 2007 - 05:15 PM

I am on some high dose steroids (to ease pericardial effusion) while undergoing all the new tests that we now know we need to do (update lab tests, heart catheterization, lung perfusion scan, sleep study, etc...).

I recently had surgery on my vocal fold and had to really up my dose of prednisone in order to function post op. I finally found the right dose and stayed at that higher dose for a few days. I want OFF this med and will begin to taper...as soon as tomorrow. My pulm wants me to taper as I can so I intend to.

In the mean time, I've had awful, awful, awful, pain in my knees and ankles. It alternates, hits out of no where, doesn't matter if I took it easy the day before, or walked all over a department store. I can't find a trigger for it.

Is it "just" part of my flare of CREST that's going on? Or is it the med? I know if you taper too fast you can have that pain, but I was experiencing that pain while raising the dosage! Again, I think I found a dose to stabalize at and stayed there for 4 or 5 days now.

I read the info about how bad Pred is for scleroderma patients. My pulmonologist is who prescribed it and it's just until I see my new rheumatologist in 2.5 weeks. I intend to taper as well as I can between now and then. Again, did I say how much I want off this Prednisone ride?

Is the joint pain part of the CREST or most likely in relation to the steroid?
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#2 barefut


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Posted 09 September 2007 - 06:37 PM

Hi Maddy,

I'm sorry to hear all you've been going through! With regard to your knee and ankle pain, I have heard that, that is a common place for sclero sufferers to hurt. My rheumatologist was surprised that I do not have knee pain as with a lot of her patients that was one of their first sclero symptoms.

I know you can hurt bad from tapering from pred too fast but it also depends how long you were on it. I have had pred bursts of up to 25mg for up to two weeks and been okay coming off rather quickly.

Was your vocal fold surgery sclero related? How did that go for you?

Best wishes on all your upcoming tests and proceedures. Take care and keep us posted.

(41 year old single mom to two young boys) ;)

#3 Maddy07


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Posted 09 September 2007 - 07:29 PM

Hey Barefut,

Yeah I've been on it since mid/end of July. I started at 40 and worked my way down to 20 no problem. My shortness of breath was GREAT and I was tapering with no problems. I had a silicone implant placed in my paralyzed vocal cord on Aug 20th and my ENT told me to simply go back to the same dosage after surgery.

Well I spent 3 days feeling run over and horrible. It's a relatively easy surgery and I was just feeling beat up! I saw my pulmonologist that week (who rx'd the pred) and he said of COURSE you need more pred after surgery. You've been under stress, your body isn't making any, etc... so we bumped it back up.

We played with the dosage because I was in severe, severe pain. I just couldn't seem to find a dose where I could "settle" ya know? I ended up at 60mg/day and have been for 6 ish days or so? My joint pain is still hitting now and again, but it's not debilitating/lasting for hours like it was.

I intend to go down by 5 tomorrow and hope that tapering this time, goes as well as it did prior to surgery. At this point though I'm having horrible fatigue, sweating, bloating, etc... all the stuff that is horrible about it. And because of fluid retention, it can't possibly be helping my pericardial effusion too much which is the whole reason for starting it! Ack!

To answer your question, my vocal cord surgery..is it related? My gut instinct is yes that it's somehow related through the CREST flare, or due to pulmonary hypertension (am in process of testing for that). Apparently about 1% of people with PH can lose their voice due to the pulmonary artery pressing on the nerve that controls the left vocal fold. I have no "apparent" cause for my nerve to stop working but.... well, it did. I have an implant placed on that side now and have a voice back. It started in Aug of last year so for this I am thankful. My 19 month old hasn't heard his mommy speak too much in his short life. My 6 year old has heard plenty ;) as has my husband. :P

Thanks for the info you're passing on. I'm just soaking it all in. It's just weird to have had CREST for 11+ years and never had any joint pain, and now this?
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#4 summer


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Posted 09 September 2007 - 07:53 PM

Hi Maddy,
Welcome to the forum, I am currently on Prednisolone at the moment, I was on 25mg for one week the second week dropped the dosage to 15mg.
I am currently starting my third week of Prednisolone and only this morning dropped it down to 10mg. I feel ok at the moment but if I get any ill effects from dropping down the dosage too quickly I shall increase it to a total of 12.5mg for the week.

My Rheumatologist and I hope to go down to 5mg per day thereafter, I have felt great being on Prednisolone. I have felt like my old self and have plenty of energy, no joint pain or stiffness.

I am not a doctor but I would think that being on Prednisolone would take away any pain or stiffness. When I initially went on Prednisolone three weeks ago it took a full five days before all of my pain/stiffness went away completely, and only then did I start to decrease my dosage.

I'm sorry I can't help you any further.

Take care
Celia :rolleyes:

#5 bookworm


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Posted 10 September 2007 - 07:13 PM

I don't know for sure and I'm not a doctor or nurse, but I have been on a low dose of prednisone for awhile and it was my understanding that it's for the joint pain that I am taking it. I don't think it causes pain. Why would you take it?

Steroids reduce imflamation and so they are given for various problems that involve swelling. Joint pain is accompanied by swelling --or rather, caused by swelling I guess! Lung prblems and breathing difficulties are often treated with steroids, like Prednisone because they, too, can be caused by swelling and inflamation.

Prednisone also is an immunosuppressant, I think, and since some joint pain (such as rheumatoid arthritis) is caused by your own immune system attacking your own body, the drug suppresses that immune system so it stops attacking you, thus relieving the pain. and causing you such pain! So, the whole point Prednisone is often given is to relieve pain.

Do you have RA? If so, that will surely be causing you joint pain.

I know Prednisone has a bad reputation but I've been on a very low dose for about three years. I have had none of the bad side effects we all hear about. I am very concerned about the recent comments on the board and the articles offered on how Prednisone should never be given to sclero patients and how many patients and doctors are unaware of this. The main thing, until now, that I have worried about regarding the use of the Prednisone is that, since it lowers the immune system, I am more susceptible to colds and flue and everything else that the immune system is supposed to fight off! Also, I think it's bad for the bones. But, as my doctor told me, sometimes it's a balancing act with these drugs. I want to be able to function and if the only way to do that is with one drug or another, I guess I will have to take the drug and hope for no side effects!

I have a doctor's appointment tomorrow afternoon and I intend to quiz my rheumatologist!! She was wanting to switch me to Methotrexate last time I went in a couple of months ago, but I resisted because that's a drug I am scared of!

I am on the forum tonight to track down those articles about Prednisone and I intend to highlight the parts I want my doctor to read and discuss with me. It may be a moot point for me if I have to get off the Pred and get on the Methotrexate, but I will try to get some answers from my doctor anyway.

I already think I know what she is going to say and that is that on a very low dose, the Pred isn't going to cause sudden renal failure -- I believe that was what the articles were about. Again, I have to find those articles. I read them before and I think the deaths were in people who were on very high doses of Pred. My doctor wants me on between 3 and 5 mg. and said she's satisfied as long as it's that low. However, recently I have been on 7 1/2 mg. and just now finally got it down to 6. That's why she's wanting to switch to Methotrexate and that's why I've been desperately trying to lower my dose back to 5! I am really scared to death of the Methotrexate! It's a chemotherapy drug, you know.

I have seldom, if ever, heard a good word about Prednisone on this board, and goodness knows, I can see why! But for me, it has been such a blessing and such a pain reliever. I don't think I would be able to walk now if I were not on it. I would be in a wheel chair.

My doctor has quite a few sclero patients and I have always thought she was wonderful and very knowlegable about the disease. Not only that, but she consults with Dr. Mayes in Houston. Dr. Mayes is listed on this site as one of the experts on this disease. So, I will be very interested in what my doctor tells me tomorrow about these Prednisone articles!

I will let you all know what I find out.

Mary in Texas

#6 jefa


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Posted 10 September 2007 - 10:25 PM

Hi, Mary. I am not a medical professional, either, but I consulted a Medicinenet article on Prednisone which seems to have a very good explanation of the drug, its uses and complications. On page 2 of the article, it says:

A serious complication of long-term use of corticosteroids is aseptic necrosis of the hip joints. Aseptic necrosis is a condition in which there is death and degeneration of the hip bone. It is a painful condition that ultimately can lead to the need for surgical replacement of the hip. Aseptic necrosis also has been reported in the knee joints. The estimated incidence of aseptic necrosis among long-term users of corticosteroids is 3-4%. Patients taking corticosteroids who develop pain in the hips or knees should report the pain to their doctors promptly.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

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