Rheumatologist appointment

[Aqua47]

After seeing the doctor today for the first visit, I would like to get the thoughts of some of the knowledgeable people on this forum. He didn’t rule out PMR, because of the blood test I had in January. At that time, I was on the Pred. He did blood work and is testing for several other possibilities for my pain. He suspects a connection to my discontinuing Budesonide for collagonous colitis, which is in remission (I think). I had been taking it for 4 years and stopped when I was becoming constipated. His orders are to reduce my dosage from 10 mg to 9 beginning in June, then 8 for July, and so on 1 mg a month. I go back in September. He also wants me to do exercises my orthopedic doctor recommended for my back problems. Any comments?

[piglette]

If you do have PMR you will probably find that you are reducing too fast. I suppose that will suggest it is PMR. Hope you get on all right.

[Aqua47 in reply to piglette]

Thanks. I think, based on what I’ve read, that it is too fast. But I will try and see what happens.

[piglette in reply to Aqua47]

Good luck

[AtopicGuy]

Did you taper off the budesonide? According to papers like the one below, budesonide is a about 4x more potent than the same dose of prednisolone when taken orally. Your doctor may be concerned that four years on such a potent steroid may mean your adrenal glands are not producing enough natural cortisol. If so, he may be prescribing prednisolone in the way you describe both to treat the PMR symptoms, and to reverse any adrenal insufficiency.

pubmed.ncbi.nlm.nih.gov/807...

[Aqua47 in reply to AtopicGuy]

Thanks for the info. I did taper off the budesonide because I was getting the opposite effect-constipation instead of diarrhea. My original dose was 9 mg and I gradually reduced until I was at 3 mg every other day. I think it was around first of December when I stopped it. Now I’m. Having to take some kind of laxative. My supposed PMR started December 18 of last year. It does look like some sort of connection.

[AtopicGuy in reply to Aqua47]

That's the 'coincidence' I think your doctor has spotted: your new inflammatory, autoimmune symptoms (PMR) began in December, just days after your 4-year-long course of high-dose steroids (equivalent to about 40mg of prednisolone per day) ended. He'll be trying to get your natural cortisol levels up while managing the autoimmunity with the lowest possible dose of steroids. Other immunosuppressive drugs might be needed.

[Aqua47 in reply to AtopicGuy]

I am still trying to understand what stopping the budesonide has to do with the PMR. Does it mean I would have had PMR anyway or sooner if I had never taken budesonide? Or did I get it sometime during that 4 years, but the budesonide took care of the pain?

[DorsetLady PMRGCAuk volunteer in reply to Aqua47]

Not sure we can answer that… you may well have had PMR for some time or all the time you were on budesonide for other issues… and it was enough to keep the inflammation dampened down enough not to cause you any obvious pain.

Now you have stopped the budesonide, the inflammation caused by PMR is being allowed to build up and cause issues.

Who knows!

[Aqua47 in reply to DorsetLady]

That sounds like a very logical explanation !

[PMRpro Ambassador in reply to Aqua47]

Don't think ANYONE could answer that sort of "what if?" question. If you were taking pred and budesonide at the same time it was a hefty dose - 4.5mg budesonide is equivalent to 15mg pred. Would have masked a lot of something.

[Aqua47 in reply to PMRpro]

I had completely stopped the budesonide for a month or so when I started having all the pain. I never took it with the prednisone. I didn’t have side effects with budesonide, like the weight gain I’ve had prednisone ( among other things). Maybe I should take budesonide instead!! I’ve made an appointment with my gastroenterologist, but the earliest one was September 23rd, unless I get called earlier from the waiting list.

[PMRpro Ambassador in reply to Aqua47]

Not sure if it works in PMR - but I do remember someone being given it some years ago.

[Aqua47 in reply to PMRpro]

Looking back on my records from November of 2019, when I was diagnosed with the colitis, I see that I did gain about 7 or more pounds, but I had previously lost some, due to all the problems I was having with diarrhea. It wasn’t a problem then, but now on the prednisone I’ve gained another 7 or 8 pounds. I was first prescribed 9 mg of budesonide, Balsalazide- 3 capsules of 750 mg each, 20 mg of prednisone and cholestryamine ( which was something like a powder to be mixed with liquid). I couldn’t tolerate all the medications except the budesonide. But it worked great, like a miracle to me, after years of problems with diarrhea.

[AtopicGuy in reply to Aqua47]

Collagenous colitis is suspected of being an autoimmune disease, as is PMR, and the fact they both respond to steroids supports that. This means your immune system is prone to wrongly attacking your own tissues.

Epidemiological studies show that having one autoimmune disease increases the likelihood of also having another. The peak age for developing PMR is around 72. As others have said, you were very unlikely to show symptoms of any underlying PMR during the 4 years you were on high-dose budesonide, because your errant immune system was heavily suppressed.

[Aqua47 in reply to AtopicGuy]

I realize I should have seen my gastroenterologist on a regular basis. The doctor who diagnosed me moved to another city about 90 miles away, so I decided to go to a doctor closer to me. The new doctor is very young, and I haven’t seen him since February 2022. He just told me to call him if I had a problem, and he kept refilling my prescriptions. I didn’t know what the medication was doing to me.

[AtopicGuy in reply to Aqua47]

As others have said, the budesonide did not cause your PMR. However, it is always important to minimise the dosage and duration of steroid treatments, wherever possible, because of the side effects.

[Aqua47 in reply to AtopicGuy]

Yes I think if I had kept seeing the doctor who diagnosed the colitis, I would have been off that steroid. But, who knows, I might have had PMR earlier!