About 6 weeks ago, after experiencing more than 3 weeks of early morning stiffness and finally losing the ability to turn over in bed or lift the covers or get up out of bed on my own, I went and got a blood test to confirm the relapse of PMR. I explained to my doctor what my symptoms were and that they were exactly what I had experienced 5 years ago when I was on Prednisone for 18 months. However, only a blood test was taken and the results more than a week later that the blood tests were normal. My symptoms had progressed to the point where I was unable to use either arm during the day and they had me take another blood test but that also showed no inflammation. My husband went with me to the doctor the third time and insisted that they give me a prescription for prednisone even though they were saying that I didn't have PMR. So they agreed and after only a 5 mg dose, I felt 100% better and after 2 days on 5 mg of prednisone I was back to normal again. It is so frustrating to experience the excruciating pain and the inability to do everyday things because of this disease, and yet the doctor or anyone else doesn't seem to understand what it is all about and how debilitating it is. I'm also frustrated with even trying to discuss this with anyone other than my husband who is there to experience it with me. People seem to just discount what I'm telling them I'm feeling or experiencing. And when the subject comes up 6 months down the road, they seem to have forgotten all about what I told them in the past about what I had experienced. It makes it quite obvious that they really don't care. It makes me angry that my own doctor didn't believe me when I told him I was having a relapse a PMR and that he was unwilling to write a prescription for prednisone and made me wait go through 3 weeks of agonizing pain before being willing to write me a prescription for prednisone. That hurt more than the pain I was experiencing. Not to feel like you're being heard or believed. I know for a fact that if they had given me a prescription for prednisone at the onset of the relapse, I could have started on 5 mg for a few days and then tapered off and then through with taking the prednisone within 2 weeks. I had a flare of PMR last May and luckily had some prednisone left over from years ago and was able to take care of the Flair within 7 days by taking 5 mg for a few days and then tapering by 1 mg per day. This form is the only place I've seen online that really gives you any real understanding or support for what it feels like to have this disease.
PMR Relapse with low inflamation tests: About... - PMRGCAuk
PMR Relapse with low inflamation tests
Hard luck that it has decided to wake up again - but a relapse at this stage is likely to be different from the flare you had back then and unlikely that 2 weeks of pred will see the end of it. You might get down to 1mg or even 1/2mg but find that zero is a step too far. It all depends on the underlying autoimmune disorder and what it decides to do.
However - yes, totally with you on the gaslighting side of things and total lack of interest on the part of some doctors. I often wonder whether it would be the same if twice as many men as women developed PMR, reversing the statistics, and they were just a bit younger so that it affected them working. I'm pretty sure there would be a lot more interest shown ...
Take heart in that you are not alone.
On three occasions this year, my plasma viscosity level results on the NHS app showed as ' within range- no action required'.....yet the numbers showed well over 1.80 each time....and I was in pain in all the PMR areas.
Following a battle to see my GP, it was confirmed they were anything but within range!...Mr Flare had come to town!
Also, I have the same with trying to explain what is going on with me to friends and family.
It does drain you....I've had..
" You don't look ill"
" I'd stop those steroids now & just take paracetamol "
" Just push through the pain, you will be fine"
" Well, you will just have to just live with pain & get on with it"
" Don't be stupid, your adrenal glands don't go to sleep, what's that got to do with your pain"
It is amazing how many ' Experts' are out there with all the answers & zero knowledge!
🤬🤬🤬🤬🤬
Have you looked at the DVD that the NE charity made to explain it to friends and family?
The links to the YouTube version - in 3 short bites - are here
hi..so sad to hear of your struggles. I totally get what you’re saying …you know your own body and what you need and you have a right to be able lead your life as free of pain as you can. Thank you so much for sharing your experience…it’s very helpful to me and many others I suspect. Your journey is a mirror image of mine..low to normal blood tests but awful relapses of stiffness/pain periodically over the 2yrs diagnosed with PMR/GCA as I try to taper down off prednisolone. So glad to hear you have the support of your husband as have I. Its very hard to convey to others the level of debilitation both mental and physical a relapse can cause. Keep going!! Stay strong! Wishing you well💕
Thanks so much for the encouragement it really helps.
Yes it's a real blessing to have a husband who can see firsthand what I've been going through. He at least can attest to the fact that I have been really suffering. However he knows me well enough not to Baby me, because he knows how easy it is to feel sorry for myself. He just keeps encouraging me to keep going. He's proud of me continuing to walk 3 to 5 times a week and appreciates that I am continuing to do most of the everyday chores around the house. Even though he knows some things are really painful, he understands that I just need to keep going. And, he is very accepting of the fact that I sometimes can't do everything I used to do. He doesn't make me feel guilty if things don't all get done in one day. I'm allowed to break up larger tasks into multiple days without feeling guilty. It's a great relief to not have to put on a false front when I'm feeling a lot of pain but at the same time he doesn't get overly sympathetic.
I had a return of PMR last year. I had PMR earlier for 5 years (a few relapses but I learnt to take it slowly) then 2 years off Pred, completely free of PMR. In early October last year I noticed I was getting steady aches around my hips, initially thought I'd overdone things or maybe osteo. However by late-ish October my shoulders were aching and then the final straw for me was the ache at the base of the back of my neck. That I knew was PMR. However since I was due to fly to Oz on Nov 1st -- how to get tests done and a GP to prescribe the necessary Pred. Thank the Lord I got a locum who believed me -- tests done same day (CRP and ESR both raised) and script issued and filled within two days. He believed me when I said it was best to hit it hard (25mg) to start and then drop as reasonably soon as possible to 15mg. At nearly one year, I am now down to 3mg. I am quite sure that this is because I know the devil/dragon/gorilla that is PMR and recognised it early and was able to treat it early. It never took hold as much this second time round.
I do sympathise with you about GP care in general. I just got very lucky with my locum.
Brilliant - and I have said this for years. They used to use 25-30mg as the starting dose and it seemed far less of a performance tapering. The 15mg starting dose is just not enough for most, even when it apparently stops the symptoms.
Yes, I only took the 25mg dose for 3 days and then dropped to 20mg. I stayed on that dose for 4 weeks while in Oz partly because I had really bad airline "flu" for the first 10 days (not fun!) and then dropped to15mg when comfortably back home.
After a couple of days on 15mg, prescribed by a temp, my own doctor put me on 30mg for a week, then 25mg for a week then 20mg when I started a normal DL taper. I'm sure that is why I've had a relatively easy journey.
Unfortunately this second time around, the disease has really taken hold. I'm struggling to reduce by 1 mg this month. The overnight pain is back and I never really feel well all day. I suppose I'm going to have to add back the one milligram of prednisone to feel good again. Then maybe try a half a milligram reduction.
Yes you're very lucky that your doctor was willing to get to the bottom of your issues quickly and respond to what you were telling him.
I can sympathise. I recently had a return of PMR symptoms quite strongly after having been at zero pred for a few months. So disheartening for a start - I could barely function with that and with osteoarthritis - and to top it off the rheumatologist said with his signature smile that I couldn't possibly have PMR back because the blood tests showed normal. Not done, he then accused me of wanting pred just to ease the pain of osteoarthritis. No amount of explanation would satisfy him. He did relent and prescribe pred. What a challenge. 
Hope he gets it one day and discovers that low level PMR inflammation may not be enough to trigger the liver to produce the proteins that raise the markers but it is enough to immobilise you! A couple of doctors in the past have commented on that - one even apologised!!
Yes! My thought about "getting it one day" as I left his rooms was for less than altruistic reasons 
But also about - it's high time that symptoms were more important than markers. It seemed like a very rigid attitude and it's only when they experience it themselves that some specialists will ever truly understand and be way more proactive, less condescending. I didn't know about the low level inflammation, the liver, proteins etc. Thankyou.
Oh I'm so sorry that you went through that with your doctor. Your situation seems similar to mine and that felt like my doctor did not believe that my symptoms were as bad as I was saying. Even though he has treated me for 23 years and knows how much I resist taking medication of any kind. And I know he's heard me say more than once that I would never take prednisone again. Well, Never Say Never. When the pain gets so debilitating you can't get out of bed then something's got to give.
Thanks Rdwr, I almost expect most specialists to work from the (outdated) textbook only, but your doc of 23 years? Good grief!!!! What we have to put up with . And yes, as per your comments below, stockpiling pred has become vital. (to our health and sanity ) .
I know how discouraging it is to have a flare and then on top of that when your doctor did not believe you---- I am glad that you are feeling much better and it sounds like you have a plan for tapering---- you may want to keep a record of your ESR and CRP markers so you can compare---also you may want to pay close attention to your remaining symptoms and adjust your tapering accordingly. I like PMRpro's suggestions to stay at 1 or 1/2 mg for now to maximize your chances for a continued recovery. All the very best to you!!
While a very low dose a prednisone- 5 mg- got me feeling almost back to 100%, I am really having a lot of difficulty after several weeks on 5 mg to reduce to 4 mg. It has been about 10 days at 4 mg and my symptoms are ramping up again. I am waking up around 2:00 a.m. with shoulders and arms and hips hurting. Throughout the day, the pain seems to settle in my hips and buttocks. It's just that old familiar feeling of what I went through 5 years ago. It's just a real trigger emotionally. I am fearful that it will take a long time to get back to normal again as it did before
In that case stay on 5mg longer and make sure that he actually enough. Plus in future reduce by 0.5mg a time -and maybe use a slower tapering plan - and make it as slow as you by repeating each stage -if you follow one of my plans they range from to 5 week version to a 14 week one-
All that you have said does suggest that 5mg is the dose you need at present - if indeed it is enough.
Hello Rdwr, I am sorry to hear that your body is not cooperating at the moment! It has been also really hard for me when I have had similar symptoms and resisted the idea that I may have to change my tapering plan - Would you consider checking your ESR and CRP levels? this information has been extremely helpful to me to determine if my tapering plan is appropriate at that moment.
I am learning that patience and listening to my body are important so I can make a wise decision---- It does happen that what I want is NOT always what my body wants- needs. I am learning to respect its path and process----
With the symptoms you describe, I agree completely with DorsetLady --- and that your symptoms will transform and eventually will disappear in their own time.
I know we really shouldn’t do it but I do feel it is worth stockpiling Pred whilst you are tapering, just as a rainy day contingency.
Just keep an eye on the use-by date!!
Yes it is necessary to stockpile some 1 mg prednisone tablets for future flares. I plan on advising the doctor that I'm having trouble tapering down after a month and will be adding back a half a milligram to see if that gets me straight again. I shouldn't have too much trouble getting the 1 mg prescription renewed later on in the cycle of reduction. And a renewal of the prescription would give me another another 90 1 mg tablets to keep on hand in case there are future flares.
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