I have been following all of you since early 2016 when I was diagnosed and treated with GCA and learned so much from you all. Despite my age (early 50s) and neg biopsy, all symptom/clinical presentation were positive, so they moved forward with the diagnosis, and placed me on the Pred 60 and all GCA symptoms and labs were gone in days, and labs normalized within a month. My question - may sound silly. Do those of you who suffer from PMR, can you share how it feels, symptoms? Prior to the GCA I had fairly debilitating pain throughout my body which I attributed to an unrelated genetic connective tissue disorder, which no doctors really understood or treated beyond ibuprofin. It had come on strong about a year or so prior to the GCA diagnosis, and created pain in hands, feet, legs, hip, arms, sore to touch, and when people hugged or shook my hand, had to treat me like a fragile elderly lady and do so very gently to avoid hurting me. Bending to pick things up was almost impossible, so I compensated at work and home to avoid the need to bend, but also was very weak in arms, having difficulty pushing/pulling doors open at work, pushing buttons. But with the GCA diagnosis and Pred Treatment, BOOM. All and I mean ALL pain was alleviated, I was fully mobile and my strength was back. I thought hmm. Maybe it was PMR, but I did not have the limited range of motion, shoulder targeted pain, nor was it worse in AM etc. So I thought no, ruled it out. As prednisone dosage weaned, pain slowly returned, and now I'm on 2.5 mg 2x/week and happy GCA hasn't returned, but the debilitation and all over body pain has, just as it was prior. I haven't adjusted the prednisone to the pain, as it wasn't GCA pain and didn't fit the PMR "bill" of symptoms when I read about it. Thoughts? Any of you have PMR pain that is no where near the typical cited in the literature? And manage it with prednisone? I think I will eventually go for a second opinion on the body pain at a University clinic that specializes in vasculitis near me, but curious on all of you who live this each day, what your thoughts are - could this indeed be PMR pain?
Is this possibly PMR pain? : I have been following... - PMRGCAuk
Is this possibly PMR pain?
Hi Sandy52,
I am 54 and was just diagnosed with both GCA and PMR. It certainly sounds like PMR pain. Everyone is different, yet arms, shoulders, hips all seem to be in common. Before the prednisone I felt very much like you. I could barely walk, hold my grandchildren, go up steps and often needed help getting out of the chair. Looking back I had symptoms like other types of body aches for over six months. It is good the prednisone is working for you. Be sure to check with your doctor to be sure you have an accurate diagnosis. I understand how frustrating it is to feel such pain with movement when we are so young. Thankful for the diagnosis. Now for the journey.
Eep feeling better!
TJ
Sandy, I would hazard a guess that as you had such a good response to steroids in the first place, whether or not your body symptoms were related to either GCA, PMR, or both (certainly those symptoms sound very akin to PMR), you have been reducing far too quickly to be at just 2.5mg twice weekly after less than 18 months. That evens out at less than 1mg a day. You haven't mentioned symptoms specific to GCA affecting the temporal artery but if the high 60mg dose was prescribed, I would guess that you presented with symptoms including head/eye and/or jaw pain? Flares in the inflammation can be quite common in the first 12-18 months of treatment.
If you can remember at which dose your pains started returning, if it was me I would go back to that dose and see if that makes a difference. If it does, you will have your answer. And unless you have good reason for reducing by as much as 2.5mg decrements on just a couple of days of the week, whatever dose you increase to, then do get some 1mg pills (5mg if necessary for the dose you need) and get on to a daily dosing pattern. Have you had the inflammatory blood test markers repeated. If not, then do get them checked as it sounds from what you say that you did have raised markers initially? I do hope that will help and that it works - good luck!
Thank you Celtic! I have not had them repeated for a couple months, at that time was on 5mg, and they were normal. Pain had started recurring, but chalked it up to my prior arthritis/collagen problems that likely were helped with the prednisone so ignored and didn't use that as an indicator. But rethinking! Thanks for the insight!
Hi Sandy,
Would agree with Celtic, much too fast a reduction for one thing. It is more than likely that your GCA and/or PMR is still very active.
At 60mg virtually all pain, whether GCA/PMR or others will be gone. Most certainly your pain pre diagnosis would indicate PMR, as would the fact that no other painkiller touched it.
No everybody gets all or most of the so called "classic" symptoms of either GCA or PMR, we all have our particular quirks! That's what makes the diagnosis difficult for some.
As for managing PMR without Pred, I'm sure some do, in fact from what has been posted on here, many people have said their parents or other relatives had it in the past but it was never diagnosed, and therefore never treated.
However, in your case I would suggest it would be very unwise. Again as Celtic said if you were started at 60mg then your sight was obviously a consideration, so not taking Pred could endanger that.
Thank you for your insight Dorset Lady! This helps adjust my line of thinking and disregarding the pain as not part of the GCA - I am a single mom with 4 kids, and work full time, so I would definitely prefer to be on pred and painfree if it's indicated - just hadn't considered this may be PMR but starting to reconsider. It is helpful to know that the PMR is not necessarily textbook in all. If this is indeed PMR and I can/should be on pred to keep pain mimimized, I'm all for it . No desire to go without - didn't like the wt gain/moon face but being pain free, having strength and being fully active is worth it if it's appropriate for the diagnosis in my eyes. More I'm reading, it seems to suggest I shouldn't rule out that this is PMR. Thank you.
All sounds typical of PMR pain to me - whatever the doctors think, there isn't a "typical" picture of a PMR patient. I hurt all over, my stiffness was all day, it hurt to touch certain areas, having my BP measured was excruciating and the "weakness" you describe fitted me too. PMR symptoms can also be symptoms of GCA, you can't say it "isn't GCA pain" since it went when your GCA was treated.
By no means everyone has shoulder pain. Sometimes that sort of pain develops after much longer being untreated. I lived with PMR for 5 years without pred - and believe me, it was no picnic! It wasn't out of choice I assure you.
I agree with Celtic and DL. If it were me I would go to 2.5mg daily for a few days and see if it helps, or even better to the dose the pain started to reappear if that was higher. And then I would tell my doctor. You can drop back to where you are after up to a week if it DOESN'T make a difference - but if a low dose of pred manages it, that is as good a reason as any to say polymyalgic presentation of GCA.
Thank you PMRpro! This is very helpful and valuable insight, and appreciate your sharing your experience and thoughts. The rheumy I see knew I had all over body pain prior to GCA, that was alleviated with the pred, but was very specific to increase the pred only if the GCA symptoms that were happening at diagnosis (systemic symptoms and head symptoms) came back. So figured had to just deal with the body pains returning. But the more I read here, I did start wondering about this being the continuum you all speak of, and maybe I should be putting back up. But if it was a collegen issue or arthritis, and didn't warrant prednisone obviously didn't wnat to prolong. But I am starting to deduce, there are not many chronic generalized pain conditions that respond this positively to prednisone, which could be the indicator it is indeed PMR. Very enlightening. I think I will try your suggestion after reading your and all the others that have responded!
When I discussed symptoms that didn't fit the classic PMR pattern my first Rheumatologist added Fibromyalgia to the diagnosis. One of my odd symptoms was skin sensitivity. I find that I have to cut all labels off the inside of my clothing because the slight friction feels like real pain. These symptoms remain as I decrease my Prednisalone dose. Stiffness went first and has not returned. I am left with exhaustion and some pain, a bit like low level flu. I am moving gradually towards 8 mgs from 20 mgs initially, diagnosed with PMR early last year.
Thank you Sheffield Jane for sharing your thoughts! Very interesting - yes, I too was wondering about fibro but just like PMR, I thought it doesn't really feel like how the texts say it should present. My body aches are so generalized, it is definitely like a constant mod flu, but I figure it's age or arthritis related. But shifting my thinking due to the great insights here.
I was into my 3rd year of GCA only when I had aches and pains all over. Luckily I had Radio 4 on and heard a researcher from Oxford talking about Vitamin D Deficiency.
I made an appointment with my GP, had a Vit D test and low and behold the result was so low.
40,000 units per day of Dekristol for 4 weeks - another test - it had risen but not enough.......so 20,000 units per day for about 10 days............another test one month later. Bingo and the aches and pains had completely gone with the dosage in the first four weeks.
Since then, 1,000 units per day every day for the past 7 years...........no problems and it says at a high level.
The Vit D testy is an exclusion test before you are diagnosed with PMR, as the defiency causes aches and pains just like PMR. It often gets missed.
Ask for the test. It is not done in routine blood tests. It costs about £14 per test in the NHS. Much more privately.
Thank you Sambucca! Interesting you say all that - When I started with the generalized pain a couple years ago (before GCA diagnosis), they did do a Vit D, and it was normal. When I was hit with the GCA, they did another, and it was normal as well. Good to know this is a good rule out test and I think what I hear you saying, is that would support the PMR diagnosis. Thank you for sharing!
Thank you Elizcarroll! Gosh, that had to have been discouraging and scarey! The GCA did cause patch of atrophy on the retina, and areas appear "dead" per the eye doc, but thankfully it has not created areas of blindness for me. The docs keep saying "up dose only if you see the same symptoms that landed you in the hospital with the GCA (I had an acute onset)" so that's what I was using (those symptoms were nonstop headache, scalp pain, high fevers, nightsweats and extreme carotid artery tenderness and an anorexic type of appetite loss. My body refused to allow me to swallow more then a couple bites of food, which was the weirdest feeling. I did have two flares, where I had to up the dose, but I know that's par for the course. I do need to get the markers checked again, last time was in Jan when I was on 5mg and they were normal. I had mild pain at the time starting to return, but again did not recognize it to be PMR until it got so very bad again as I kept lowering. Good luck with your eyesight and ongoing treatment, and appreciate your input and story!
Let us know what the outcome is if you go to the University Clinic that specialises in Vasculitis Pain. Every bit of knowledge helps someone on here.
Hi Sandy 52,
I am copying below (sorry it is so long) my first post back in Nov 2015. It will give you an idea of my course initially. You will note that I did not have morning stiffness. Since that post I did have a full response to prednisone but after tapering off just recently my "PMR" symptoms returned but not the "GCA" symptoms. I have been struggling with my rheumatologist who now believes I have Fibromyalgia but that is another story. Hopefully the description below helps.
I am a 64 year old female living in Canada, previously healthy and fit. My past history includes migraines which were successfully treated with acupuncture and have been infrequent for the past 6 years as well as high cholesterol for which I have received statins several times but stopped due to muscle pain - the latest being Crestor 5 mg daily which I tried twice. On July 28th I restarted Crestor 5 mg on alternate days to see if I could tolerate this without muscle pain. I also took Coenzyme Q10 to try and prevent the muscle pain side effect. My cholesterol level at this time was 7.6 on a vegan diet. In preparation for a trip to Argentina I decided to have Twinrix immunization (Hepatitis A & B). The first injection was July 27, 2015 & the second injection was Aug 31st. The second injection was quite painful.
Around Aug 29th I developed a migraine headache along with painful neck and shoulder muscles. This headache would not go away and so I went back to acupuncture treatments and also got a prescription for Imitrex 50 mg which I hadn't taken for many years. Around this time I stopped the Crestor thinking it was contributing to the sore neck and shoulder muscles. I flew to Argentina on Sept 11th and came home on Sept 30th. During my stay in Argentina, I had a migraine headache (I think it was always on the left side) most of the time and on one occasion I developed severe jaw pain. After a visit to Iguazu Falls, a jungle area where I got a few mosquito bites, I developed muscle pain. It felt like I had done a big workout and had sore muscles but the pain would not go away. The pain was mostly in my legs and lower back but eventually spread to my shoulders. I never had what I considered stiffness but I was slow to get up from a chair or to put on a sweater due to the pain. It hurt to roll over in bed. I was able to function by taking Tylenol # 1 and either Advil or Aleve every day. Other things began to happen as well, I hadn't had much of an appetite due to the migraine but now my appetite worsened. As well, I felt chilled most of the time and had a night sweat towards the end of my stay in Argentina, which continued when I returned home. When I got home I had cold symptoms and a couple of days later I had a temperature of 38.5 and a sore throat and ears. On Oct 6th I went to my family doctor who set up three appointments with specialists (Rheumatologist, Internal Medicine and Infectious Disease) and sent me for blood work the same day. The next day I was told to see the Rheumatologist immediately as my ESR was elevated at 66. I got a copy of my blood work later and I also had decreased hemoglobin, increased ferritin, increased neutrophils and platelets. The family doctor told me he suspected PMR/GCA. When I saw the Rheumatologist she told me that she thought I had PMR but her suspicion for GCA was low. I did not have a tender temporal artery or jaw claudication or eye symptoms. I told her I had an Infectious Disease appointment in one week and asked if I could wait to start prednisone until I had seen this doctor. I was hoping that some mosquito born infection could explain my symptoms. She said that would not be a problem and ordered an ESR and CRP in a week's time. I saw the Infectious Disease doctor who thought I had Chikungunya but when I went home and read the symptoms of this disease I was skeptical. On Oct 19th I called the Rheumatologist's office to ask if the blood work had come back. I got an appointment to see the Rheumatologist on Oct 21st. That day she told me my ESR had dropped but my CRP was very high (88). She started me on prednisone 40 mg/day for two weeks, then 35 mg/day for one week and ordered a temporal artery biopsy. By the way, the Internal Medicine specialist said he didn't know what I had but it would probably go away. He ordered a lot of blood work including blood cultures.
Course on Prednisone
Oct 21st (day 1) started on prednisone 40 mg. I noticed that I had dilated blood vessels on both sides of my temples, which I had never noticed before. On day 2, my muscle pain had improved slightly but not my headache. In the evening I had some blurred vision and a tingling in my neck and shoulder on the right side (this tingling has continued to date). I went to ER where I was assured I was on the right dose of prednisone but they told me that having a temporal artery biopsy after I had started prednisone would be a waste of time. During my long wait in ER I panicked and took an extra 20 mg of prednisone thinking that I needed to save my vision. When I got home I did some research on timing of temporal artery biopsies and found a study supporting doing the biopsy later. On day 3, I had no headache (finally after almost two months of constant pain). I should also mention that in addition to the headache on the left I had ear pain and this disappeared at the same time as the headache. On day 4, I had an episode of severe jaw pain during the night. On day 6, I noticed that I had some jaw tiredness while eating (this has continued to date when I eat something hard). On day 8, I noticed that I had a tender spot on my right temple and this is eventually where the biopsy was taken from. On day 9, I had an episode of throat tightness/chest pain, which went away with a drink of water. The shoulder pain was now gone. On day 12, I noticed some numbness around my mouth (this has continued to date). On day 13, all my muscle pain was gone. I also noticed the blood vessels on my left temple were no longer prominent. On day 15, my prednisone dose was reduced to 35 mg and I had the temporal artery biopsy on the tender spot on my right temple. The surgeon told me the dilated blood vessels were arteries (I had thought they were veins). My blood pressure (BP) which is always normal was high that day both pre and post biopsy. I have been measuring it twice a day since and have reduced my salt intake. On day 16, while talking to a friend I got a sensation that started at the biopsy site and spread back over my head. The sensation eventually calmed down but the area felt numb (I still feel some numbness to date). On day 16, when speaking to a friend the same sensation started again and as well I had some blurred vision. I hate to admit this but I ended up going to ER again and was told it was neuroapraxia (failure of nerve conduction). On day 20, I saw my family doctor who took out my stitches and noted that my BP was high. I am to check my BP twice a day and see her in two weeks. She also started me on Actonel 35 mg/week for osteoporosis. I had had a bone density scan in August that showed high fracture risk (>20%) over 10 years. On day 21, the tingling in my neck & shoulder increased and the sensation on my head came back. I also had some pain on the right side of my chest and in my throat and an increase in the numbness around my mouth that went into my nose as well. I saw the Rheumatologist that afternoon and she said she did not know what was causing these symptoms (tingling, numbness, etc.) but that this was not from GCA and that arteritis would not progress since I was on prednisone. She also told me that the biopsy was negative. She didn't say I had GCA but wanted me to continue on prednisone 35 mg for a total of two weeks before dropping to 30 mg for two weeks, then 25 mg for two weeks then 20 mg for a month and then to come back to see her. On day 22, in the morning felt a bit light headed and not quite right but by the afternoon I was better. On day 23, I had my best day so far. I even forgot about PMR/GCA for a few minutes. It is now day 24 and I have had a pretty good day. I had some tightness in my throat early in the day and a twinge of muscle pain in my right butt.
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