New here; undiagnosed; suspecting PMR: I am 6... - PMRGCAuk

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New here; undiagnosed; suspecting PMR

Duffer55
Duffer55

I am 63; recently experienced pain and stiffness I buttock/hip area and shoulders. Symptoms are always worse in the am. I went to a nurse practitioner who did blood work. Elevated ESR so she gave me a prednisone pack for inflammation. Symptoms got better; then worsened, so returned to a doctor who did additional blood work with CPR elevated so he gave me a 20 day script for prednisone. 40 mg for 5 days; then 30 mg, 20 mg, 10 mg for 5 days each. Symptoms got better, then worse when pill were done, Another trip back to same doctor. This time many X-rays of hips, neck, and shoulders. No blood work, more prednisone with the same dosage. Symptoms improved once again. I am currently tapering to 10 mg again.

After researching and finding a couple of forums, I now have an appointment with another provider who specializes in this area (not a rheumatologist) . I will be off prednisone for about a week before I can see him. Any suggestions on what other blood work to have done or imaging? I want to rule out any other diagnosis, but do feel like PMR is what I have.

18 Replies

I’m sorry but if it is PMR 20 day course of pred is useless , it’s a long term dose and very slow reduction that’s needed . Can you read some of the posts on here ? Lots to help . Myself 23 months in .

Hello, what a worry for you. I’m not surprised your pain is back. If you do have PMR it is a condition that takes years to burn out and requires a very slow taper with Pred. The approach so far is similar to that given to an asthmatic with an acute chest infection not a long standing autoimmune condition. Pred is not like an antibiotic where you blast it, kill the big and off you go. The Pred is not a cure but just a way of stopping the inflammation causing problems while your body decides when it is going to go into remission. When you go below the dose you need at any one time to hold that inflammation at bay, you get pain. No doctor can predict or dictate when that’ll be. Anyway, sit tight and the experts will be along.

I think you have PMR too. I also think that this prescribing protocol is not helping. Your body needs to settle. The more usual prescribing would be a start dose of 15 mg to 25 mg. Stay there for maybe 6 weeks then start a very gentle taper by reducing by 1 mg a day each week. For instance one day 24 mgs then the rest 25 mgs, then 2 days 24 mgs and the rest 25, until you are on a full week of 24 mgs. If all is well do the same thing down to 23 mgs. This way if you haven’t been messed about too much, in time you will arrive at 10 mgs ( always stop at a dose if your symptoms are coming back.) Then use a pill cutter and do the same process, going down by half a 1 mg tablet. The aim is to arrive at your best controlling dose.

The reason I used 25 mgs as the illustrated start dose is because I feel that your body will be upset and therefore need to start at the high end of PMR dosage. This is a long term disease. Short sharp shocks don’t work in my experience and with everything I have learned and read. We have to be quite proactive in the management of the disease unless we are very lucky with our doctor. I hope this helps.

Thank you for your advice. I have 16 days until my appointment. I will run out of prednisone seven days before I can be seen. Part of me says that’s a good thing because my symptoms won’t be masked by the drug. Part of me says that may be too much too tolerate. Also, I would like to know what impact the prednisone would have on new blood tests. Would it be better not to have the Pred in my system? I realize the dosage I have been on isn’t right, but then I don’t think the doctor I went to has a clue to what is going on with me. My next appt is with a new doctor.

Another question I have is in regards to work. I am currently working but wondering how long I can continue that. I work in health care so worry about exposure to illnesses Ie. MRSA, C diff, and flu. I’m wondering about checking into short term disability until this gets settled. Has anyone else been able to qualify for std?

SnazzyD
SnazzyD in reply to Duffer55

Hello again, perhaps the Pred will affect the bloods but at least we know that Pred improves your symptoms that return with reduced dose. Some people don’t even get a trial like that which can be handy diagnosing a condition that doesn’t have a specific test. Don’t be surprised if you feel a bit off after such a seesaw of dosage then suddenly you have nothing.

As for work, some people manage it but often it’s too much as the Pred effects kick in and the fatigue from PMR has a go too. It is best in my opinion to see this as a long term situation. At least have plan B out the back with its engine running.

DorsetLady
DorsetLadyPMRGCAuk volunteer

If you run out of Pred before next appointment that’s not good - for you or your body. You need to try and eek it out somehow.

It may give your tests a more “positive” result, but it won’t be comfortable for you. So it’s a bit of a Catch 22 situation- what you do is up to you, unless you can get an earlier appointment. Although if you can hang on, a different doctor may have more idea of how to treat your illness.

As you are in US then most if us on here can’t advise re disability, but I’m sure you will get answers from your side of the pond idc.

Welcome to this forum if that is where you need to be and it sounds very much like it. I’m nearly three years into PMR and it’s nasty little friend GCA can’t add anything to the above, reading some old newbie posts is a good idea. All good wishes.

PMRpro
PMRproAmbassador

A week of no pred will be rather uncomfortable - but I managed 5 years! There are a lot of advantages for you to see this doctor with your symptoms in all their glory - and he would be able to do the most useful form of imaging and get a meaningful result. PET imaging is recommended - but it doesn't work well if the patient is on some pred. It will show inflammation around joints and in arteries if there is any.

You are safe enough stopping the pred as you have been tapering each time - and the fewer starts and stops the better.

Update. I did not want to run out of Pred so made an appointment with new internal medicine doctor. He did prescribe more Pred but a 20 mg dose for 30 days. He said 40 mg was to high of a dose. He suspects PMR, but since I told him my left arm was more painful he thinks possible rotator cuff. He also is trying to get me an appt with a rheumatologist. It’s been almost a week so we will see.

It’s been 3 days now on 20 mg and the pain seems to be returning. I have been keeping a journal and it seemed to be better at 40 and 30 mg. I know that it is different for everyone, but how will I know when I am on correct dose? It seems like I have pain all day but tolerable around 10:00. I consider it painful when it hurts to move my arms and walk. I am trying to take my Pred around 4am now. I can’t sleep anyway.

Also , now having issues with high blood pressure so back to the doctor, this time a nurse practitioner. She did blood work. First time since starting Pred and my numbers have changed. Some abnormal scores, but she says don’t worry. I’m now on a bp medicine.

PMRpro
PMRproAmbassador in reply to Duffer55

Did she tell you what tests were abnormal? It might be helpful to know.

Are you pacing and resting properly? Your body is intolerant of acute exercise and if you do too much the muscles will let you know because all the pred can do is mop up the inflammation - the actual disease process is still ongoing in the background and that makes you feel unwell and sore.

Most people with PMR will respond pretty well to 20-25mg - and if you need as much as 30 or 40mg it may be a sign this isn't the PMR we talk about here. PMR isn't the disease, it is the name given to a set of symptoms that is caused by an underlying disorder and there are quite a few of them that should be ruled out before saying is is this PMR. Which is why I asked about the bloods.

WBC 10.3, neutrophils 88.6, anc 9.1, glucose 143, . MPV6.0, lymphocytes 7.9 not sure if that is helpful to you. I agree with you, but been to 4 different providers and not one seems to be interested into what is going on with me. As far as exercise, not doing any. I am still working and trying to get through the day. I have asked to go on a medical leave and get no where. They are not listening to how I feel. New doctor appt in 5 days so I am hoping he will look at the last 2 months and get me some answers. I don’t know what to ask them to rule out.

PMRpro
PMRproAmbassador in reply to Duffer55

I am of the opinion they need to look a bit more closely at your blood count - some are slightly out of range and that can be the case with some underlying causes of PMR symptoms. Pred will increase some of them but not others. They may be fine - but that does need to be checked. It is their job to know what causes such symptoms and what to rule out - they charge enough! Just take notes of all that has happened and a copy of the blood test results if you have one. Don't gloss over how unwell you feel - I often tell women not to go mad dressing up and with the make-up: it hides how unwell they really are! Do you have copies of the x-rays and stuff? I can have copies of my own to take to other doctors - very useful :)

Good luck with the new doc - and do tell us how you get on.

This is an interesting site which will give you some idea what the doctors should be looking for to rule out anything sinister: uptodate.com/contents/clini...

You can google polymyalgia differential diagnosis to find information in maybe a more accessible form.

Duffer55
Duffer55 in reply to HeronNS

Thank you. I already have a copy of that in my collection. I haven’t had time to read through it yet, but will before next appt and plan to take a copy with me for the doctor. The one thing about this forum is, a group of people who listen and understand what you are going through.

Yes I do have copies of everything. I have access through a program called my chart and it keeps track of all visits and tests. I have started a binder of everything. I should add, I work in health care, occupational therapy, so am well aware of health issues. Trust me, I have been in tears during some of these visits but it hasn’t impacted them in how I feel. My bp normally runs 110/68. It was getting higher for the last three days and yesterday it was 174/110. She told me not to take it every day because the anxiety could increase it. I don’t understand if your blood work comes back abnormal and it has changed from baseline (pre prednisone) you are told not to worry about it. Why even do any blood work. So far in the last two months this has cost me close to 3000.00 dollars so I guess I deserve to get some answers.

Today I took my Pred at 4 and 3 hours later, the pain has decreased and I feel like I can move again.

PMRpro
PMRproAmbassador in reply to Duffer55

That sounds positive at least. That is rather steep - do you have no insurance cover?

PMR/GCA that is affecting arteries can well lead to raised BP as the inflammation narrows the lumen and that results in increased blood pressure. Does the BP fall once the pred is kicking in to relieve the symptoms? That might suggest the arteries are involved - and account for why you feel better at a higher dose. I do think the possibility of GCA must be thrown into the mix for consideration.

So the magic time around 10:00, and the mobility ROM is improved. Pain is under control except the occasional jab I get from reaching to far or doing too much with my patients. I am wondering if bumping up to 25, taking 5 before bed would help me sleep and wake up without all the stiffness. I’m going to approach new doc with that scenario. To me, once the pain and stiffness goes away, you are left with the minor aches and pains that were masked earlier. And the fatigue.

PMRpro
PMRproAmbassador in reply to Duffer55

Try splitting 15/5 without raising the dose first. That may work on its own. If not you can add a bit more. The higher you go, the further you will have to reduce afterwards. The fatigue is a given I fear - only pacing helps that.

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