Still waiting to get better

68 year old male. I was diagnosed with PMR April 2011. Currently on 7 mg. Prednisone. I have tapered down to 3 mg many times but always wind up with a severe flare. This time I only made it down to 6. My rheumatologist has changed my diagnosis to angklosing spondylosis. What do you think. Also, he wants to try Remicade on me.

[VAl4266]

I stared PMR 9 years ago and also yo yo'd up and down wit flares after the 7 mg mark,I can't say about your new diagnosis, but would be worried to com off predisilone as it's the only med that controls the pain, what does your doctor think?

[PMRpro Ambassador]

Does your rheumy have evidence it really is AS - x-rays or MRI, appropriate symptoms for example, to justify his opinion? IF it really is AS then Remicade is an appropriate drug - an anti-TNF alpha biologic - and will make a big difference. There is a choice of several to try. However - if it is PMR, the anti-TNF's are not recommended as they don't work for PMR and can cause problems.

[Hidden in reply to PMRpro]

Prednisone works like magic on me, if I can get enough. The rheumy did some x-rays, but no MRI. He refuses to offer me any treatment except for Remicade. He did do a lot of blood work.

[PMRpro Ambassador in reply to Hidden]

No chance of another doctor? Does Remicade work?

Do you happen to know what your ESR (sed rate) is - and what it was when you were on pred?

[Hidden in reply to PMRpro]

Plenty of doctors, but I get the same from all of them. If the blood work does not support PMR then you don't have it. I was diagnosed with PMR in 2011, but I had it since 2009. When diagnosed, my SED- RATE was around 100. Nowdays these new doctors only say, your blood work is all in range. I still take Prednisone, but only 5 mg are provided by the VA. I did get one Medrol injection in January, but it only last about a month.

[PMRpro Ambassador in reply to Hidden]

Sheer ignorance and very poor patient care on their part. If it isn't PMR it is something and they need to identify the best medication to manage it.

Does the Remicade work?

[Hidden in reply to PMRpro]

I have not tried Remicade yet. Prednisone worked great for years, but they said I had to get down to zero. I was comfortable at 5 mg for years but then after many tapers everying went out of control. Last Thursday the doctor raised me from 6 t0 7 mg of pred with no relief of symptoms as of today.

[PMRpro Ambassador in reply to Hidden]

I suppose you have to try it and see if it works - if it doesn't they'll then have to have a rethink won;t they?

Though personally if 8mg of pred was enough I'd far rather be on it than a biologic.

[Linny3]

I was diagnosed with AS many years ago but not bad enough to do anything about?

Then 18 mos ago diagnosed with pmr. I asked about the AS and they said nope don't have it. I still wonder?

Take Care

Lin

[Jocelyn344]

Did you have your ESR measured. That is a good indicator of how you are doing. CPR is not the same.

[PMRpro Ambassador in reply to Jocelyn344]

ESR isn't really a particularly good indicator since it can be affected (and raised) by many other things, even a cold or (unlikely for us) pregnancy, and is not specific to any one form of inflammation! CRP is felt by many experts to be more reliable as it isn't affected by so many things but even a bad cold affecting your chest will send it up. And for 1 in 5 people, neither work reliably as they are not raised out of "normal range" at all.

[Hidden in reply to PMRpro]

I have been going to my primary care doctor and rheumatologist and they have been refusing to raise my prednisone dose since last October except for the Burst packs. The doctor that diagnosed me retired 4 years ago and I have been in a lot of really bad pain since. They say if my blood work is not out of range, that I no longer have PMR. The doctor that retired would always help me immediately without even waiting for the blood work to come back. usually he gave me a medrol injection. I cannot find a doctor right now to even get relief. I hurt worse now than ever and the pain is a lot more widespread than in 2011.

[PMRpro Ambassador in reply to Hidden]

They are so stupid - burst packs are the worst possible thing for PMR. They should be considering that if a burst pack gives you temporary relief - there is something very PMR-like going on. They should treat the patient and their symptoms - not the lab values.

[HeronNS in reply to Hidden]

Would your doctor be insulted or pleased to receive a copy of the Oxford Rheumatology Library "Polymyalgia Rheumatica and Giant Cell Arteritis"? It's a book for the medical profession, published a couple of years ago, with contributed articles from top people in the field. Can get it through Amazon, a bit pricey, but it's a skinny paperback so not intimidating.

[ninjapete]

I got down to 12 mg of prednisone and it started glaring up again. I went back up to 1g and am now at the 13 mg mark. Also I have found that splitting the dosage to 10 in the morning and 3 at night works best. I have had put since Jan. 2018. Started at 30 mg. I have never heard of angklosing spondylitis, or Remicade. Will have to look those up. Good luck

[Hidden in reply to ninjapete]

Since 2011 I have been going up and down on prednisone dosage. I got relief several times at 5mg for months at a time, but they always told me you have to taper all the way off. The lowest I have ever been is 3 mg. I have not been comfortable at any dose they give me in a long time.

[paulst955]

Do you have lower back pain that's the major symptom of angklosing spondylosis. Google.

Like you I am a 67 year male had PMR since 2012. Had several flares and can't get below 4 mg.

Re rheumatologist I gave up on mine in my local hospital and refuse to go back, why you ask he was completely clue less on PMR he just asked me wave my arms around every time I went and when blood tests came back normal he said i did not have PMR when I explained the steroids where doing their job the meeting ended. The only person I spoke to in the dept who had any Idea was the senior nurse.

[Hidden in reply to paulst955]

I have never had much lower back pain. I have the same problem with the blood test, they come back in range most of the time. They tell me you cannot have PMR if the blood work does not indicate it. The doctor that diagnosed me in 2011 checked my blood for 3 years before it went out of range, but he always kept my pain under control. The doctors I see now don't care how bad I hurt. The VA gives me hydrocodone and 5 mg of prednisone a day, but since I flared up last October this is not enough. I wish I could find a good M.D. Seems to me that these younger doctors must not be as well educated as they use to be.

[GerriMc]

Oh this is so disappointing. How frustrating for you. I was doing fine until I got to 3.5 mg but just got too stiff and sore again so have gone back to 4.5. Suppose I just have to face up to the fact that this could happen to me too. I’m wishing you well and hope you get well soon!