My husband has been undergoing treatment for PMR since September of this year. He initially went to the doctor with extreme pain all over, muscles, joints, back, neck, head. His GP sent him to a rheumatologist because he suspected rheumatoid arthritis. The specialist suspected temporal arteritis and began treatment with 60 mg of prednisone right away and scheduled a biopsy of is temporal arteries. That biopsy came back negative so he said to reduce the pred to 20mg per day immediately (he had been on the 60 mg a little over a week). We tried and that night he woke up in excruciating pain. He took a 20 mg tablet and it subsided. Called the doctor the next day and we went to 40 mg for 4 d, and 30 for 3 d and then we were to go to 20. Along with the pred, he prescribed two 50 mg of tramadol twice a day as needed. He did ok on the 40 and 30 but when we tried the twenty he again awoke in the night in extreme pain. He took a 10 mg and the pain subsided. This web site has been so helpful in understanding this disease. The rheumatologist gave us no information on what to expect other than he might feel a little worse for a couple of days after the reduction in pred. We are still trying to sort all of this out and right now are at the 30 mg/d. He is taking 20 in the morning and 10 at night. I am not sure whether he should split the dose like that or take the dose all at once. We do not have another appointment until November 1. Thank you for all the information provided here.
New to the site.: My husband has been undergoing... - PMRGCAuk
New to the site.
I am not an expert with GCA, but I do know from other postings here that just because a biopsy comes back as negative, it doesn't mean a person hasn't got GCA. (If there is a positive biopsy, then it is a definite yes.) The fact that your husband suffered so much when the dose was lowered suggests that he does need at least 30 mgs. at the moment. If it is GCA, it seems to me to be very dangerous to be messing about with his doses when he obviously needs a higher dose than the Rheumy wants to let him have. You certainly don't want him to lose his sight through not having enough Pred. I'm not sure if Tramadol will be any use to him, it doesn't usually do anything for PMR or GCA.
Sadly, we keep hearing this about certain Rheumys who don't seem to understand PMR/GCA and what patients' bodies are telling them!!
Thank you so much for the reply. I too am concerned that maybe the biopsy could be a false negative. The tramadol has done little for the pain, but on the plus side it does seem to help him sleep at night, which he was not doing very well.
Why on earth did the rheumie prescribe Tramadol as it does nothing for PMR? Does your husband have something else that causes pain too, or is it just another rheumie not really conversant with PMR?
Before all this he did not have any problems other than a few aches and pains normal for a 65 year old and was not on any medications.
Unfortunately a negative biopsy does not mean that your husband has not got GCA. It just means that there was no evidence in the part of the temporal artery that was examined. Therefore the treatment should proceed as if this was his definitive diagnosis. It is important to treat GCA with a high dose of Prednisalone ( start dose 60 mgs or more) and wait until the symptoms have fully settled before reducing the dose gradually. The advice for GCA is that the dose should be taken altogether, probably in the early morning. You will be aware of the danger to your husband’s eyesight if the inflammation is not controlled. I am really not surprised that he is suffering with the inexplicable messing about with his dose. It seems like there is a lack of understanding in his medical advisors thinking. Please ask them for an explanation. If he does well on 30mgs then he should pause there for about a month in my view to allow his symptoms to settle. In the meantime I would consult an opthamologist or get a referral to the eye hospital to have a thorough eye examination. I hope that he feels better soon!
We are staying on the 30 mgs for a while. We have decided that, the pain is too much and then he feels so badly afterward. He has an appointment next week with our eye doctor. Thank you so much for the information and well wishes.
Hum - I think I might be seeking another opinion. A negative biopsy DOES NOT MEAN IT ISN'T GCA. It just means they didn't find what they were looking for and there are a lot of reasons that may happen. "he might feel a little worse for a couple of days after the reduction in pred." - what a delightful, concerned healthcare professional! Theoretically, yes, in practice, dropping from 60 to 20 overnight is a massive change in dose and few people would find it easy even after less than 10 days. And he's a trifle ignorant if he thinks tramadol will help much! Though maybe it can help with withdrawal pain it won't help PMR or GCA pain.
It is usual to take the pred dose all in one dose - that way you get the maximum antiinflammatory effect - but a study found it didn't really make much difference if it was split. Whatever it is, it seems to need more than 20mg - and that is unusual for PMR alone. But some people do need a bit more. If he takes the 30mg all at once - does the symptom relief last the full 24 hours? What symptoms does he still have? Did they start suddenly or did they creep up on him?
Have you talked to your GP? What does he think?
My husband and I had never even heard of GCA of PMR when all this started. I am thankful to have found this site. When we did the first drop in dose from 60 to 20 and he woke up in such excruciating pain I was so scared, I thought he was going to die.
At the 30 mg dose (20 in the morning and 10 before he goes to bed) it does last until the next morning until he takes the 20 again. He has not taken the 30 all at once, when we did the decrease from 40 to 30, he was taking the 20 two times per day. He wakes up a bit stiff and sore in the muscles of his legs but it subsides after he moves around and after he has taken the pred. When we tried to only take 20 in the morning, that night he described pain that woke him up as a "burning in his leg and arm muscles that goes clear to the bone" he literally cannot stand it. When he first started on the pred he also had pain in his back but that thankfully has stopped. His c-reactive protein was 76.2 mg/l when this all began in August with the first blood test before he saw the rheumatoid dr. and has dropped to 52.6 (as of last week) but I am not sure that is significant. The ESR last week was 20 mm/hr, which I guess is the high end of normal.
We have not spoken with his GP since he set up the appointment with the specialist. I think it would be a good idea for him to see him again. He is a caring doctor. The specialist was a bit dismissive of some of the questions I asked him which was somewhat annoying. I specifically asked him about the very low iron level in my husband's bloodwork, if it was related to this condition. He basically dismissed it and said we needed to check with the GP that my husband may need to have another colonoscopy. After that I did some research and found that low iron is associated with chronic inflammation, so I am guessing that would be the case with PMR and GCA. These are things I think we should talk about with his GP.
Thank you again for allowing me to get all this out there, it helps quite a bit.
"The ESR last week was 20 mm/hr, which I guess is the high end of normal."
Possibly - but not necessarily HIS normal. The normal range is the range that includes 95% of the normal healthy population. Mine personal normal ESR is about 4 - so if it gets to 20 it is VERY raised. And the CRP is still very high - I'm surprised he is so keen to reduce so fast without knowing how your husband copes.
The low iron may well be the anaemia of chronic inflammation - and it really wouldn't have hurt the rheumy to mention that. But there are a lot of rheumies who behave as if PMR is beneath them - not so much with GCA, that is a potentially life-changing disorder. But PMR - take some pred and everything in the garden will be back to normal and rosy and go away and stop bothering me...
Not going to add anything to what others have already said, but please have a look at this, it’s a post I wrote after my GCA went into remission.
Like many on here, there was very little coming from the doctors at the start of my journey, so hopefully this will fill in the gaps of your knowledge. Your husband is lucky to have you as “his rock”
healthunlocked.com/pmrgcauk...
Thank you for the link to your post. I printed it out for husband to read and he really liked it. It was helpful to him to know that he is not the only one with these symptoms.
I appreciate the kind comment about my being "the rock", actually I was referring to him.
Scary and confusing times in the early days. Stick with this forum, these folks are a wealth of knowledge. We are here for you and your husband as you navigate new waters.
Be sure you husband continues to listen to his body/symptoms, that should be the primary guiding factor moving forward.
So glad you decided to post and introduce yourself, I have a soft spot in my heart for the intimate partners of people who have PMR/GCA. Your patience will be called upon, and likely very much appreciated as your husband goes on this (often) lengthy, frustrating journey. I assure you, things will get better. I am 5.5 months into my (diagnosed) PMR journey, and happy to report better days and less strain on my closest relationships.
Wishing you all the best moving forward.
I can’t add anything more relevant than what’s been said already. My opinion, to much of a reduction, too fast! I wish him well and hope that you get it sorted. I’ll keep him in my thoughts and send healing vibes.
Thank you that means a lot.
The rock. I admire you so much but let me prepare you please xxx. I've been on pred at high dose for nearly three months and it's really played hell with my mood. If your husband acts weird or out of character please read my posts or those of others by using the SEARCH button. Much love to you xxxx. Good luck to your husband and wow......they are not doing the right thing by him xxxxx
Thank you. I will take what you say to heart and remember to read your posts.
I am very new to this site as only got told I had pmr a week ago but I am totally and utterly disgusted at a the treatment from supposed professional medics. I worked for the nhs for years and always believed that although our doctors sometimes got it wrong that in the main they were trying their best for us but I can honestly say that from the comments on this forum, our so called professionals need more training as they are failing us big time!! I worked with so many excellent doctors but it doesn’t look like any of the good ones made their way into rheumatology. Hope your husbands dymptoms settle down soonx
Thank you so much.
Fair's fair: there are some superb doctors in the PMR/rheumatology field. I know some of them personally. Unfortunately there are far more of the other sort! It is an international problem - and I have no idea where the answer lies.
I must admit the surgeons I have had for NHS operations have been outstanding for both elective and emergency surgery. I have found that in the rheumatology area many do have a lot to be desired. I have seen four rheumies so far one private and three NHS. I have not learnt anything from them apart from the first who was private and diagnosed PMR and gave me pred. After that I became a cash cow.
Again won't add much more than has already been said but clearly your husband needs the higher dose and certainly not the speedy reduction so far. I had a negative TAB but a positive Ultra Sound - not everywhere is equipped to do them as it is a specialism requiring properly trained doctors. I have GCA and PMR and have never been told to split any dose and to take them in the morning, the earlier the better to try to nip the inflammatory invasion in the bud. Just be wary of his eyesight, any sign of visual disturbance should be treated as a medical emergency, which is what GCA is. Not the same for PMR although that is debilitating in its own right.
You are doing a sterling job being caring and attentive, you will get there and your concerns are not unfounded. Take him back to the doctors, don't wait until the 1st. We always say if he feels better on a higher dose he needs it and to stay on it until all symptoms have subsided - only then start a more sensible reduction plan.
His Rheumie/GP will also know that what works for one doesn't another and for that reason all advice given is a guide only. Rule of thumb is a 10% reduction of the previous dose. Also as he reduces he will suffer symptoms, the same as his illness, which will go after a few days, these are withdrawals and are normal. If he gets increased symptoms for no apparent reason and doesn't get better this could be a flare where the rule is to go back to the previous dose he was symptom free on and stay there until symptoms have completely subsided before the next reduction. He must keep his doctors informed of any changes. Once he's got to know his body it will become much easier to manage. This is a long journey and he needs to be as comfortable as possible along the way. ATB.
"... will also know ..." - MAY also know. I wouldn't hold my breath.
Thank you for the advice. We really appreciate it as we try to get this all sorted out.
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