I started with PMR symptoms last October, a couple of days after flu and covid jabs.
I was put on 15 mg. of Prednisolone early November and GP told me to taper to 12.5 after three weeks. I did not feel very good even on 15 mg.
I saw a rheumatologist late December who said that I probably started on too low a dose as my blood test markers were really high.
I was put on 20 mg. for two weeks ( bliss - no pain and began to feel almost normal)
However rheumatologist said to go down to 15 mg. after two weeks and now I am in pain again.
I phoned a Rheumatology helpline at my hospital ; the pain is mainly around my rib cage and feels as though I have a too tight bra band even if I don’t wear one. Other PMR symptoms- painful upper arms, hips etc. have pretty much stayed away. The nurse said that the ribcage pain didn’t sound like a PMR symptom ( I strongly suspect that it is ) and was more likely to be osteoarthritis. She was supposed to get back to me after speaking to my consultant but has not done so yet.
I am contemplating taking an ‘ executive ‘ decision and just upping my dose again to 20 mg. for a few days to see what happens. Any advice?
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Spinnie
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I think I agree, I would go back to 20mg and say drop 2.5mg when you feel OK. I had the same problem on 20mg. My rheumatologist insisted I drop 5mg after three weeks, he only gave me 5mg coated Pred. I felt terrible. I packed in the rheumatologist.
Thankyou - if it were not for this group I don’t think that I would have the confidence to do it- I would probably have continued as instructed. Reading articles and posts on this site has made me question what I am being told and to try make informed decisions.
The thing is we know our bodies the best and if your told to taper down 2mg and you get the pain back this wasn't the right decision for you. I do my own tapering now to what feels right for me good luck
Like piglette probably - I think the nurse is talking out of a hole in her head!! If your markers were really high and 20mg was deemed required - it is also likely to be required for more than 2 weeks! The starting dose should be continued and the markers monitored - and no reduction should be considered until it is clear the markers are falling steadily, and preferably not until they are back in normal range or nearly there, And 5mg reduction after 2 weeks was also really too much, 2,5mg would have been far more sensible.
If it were me and I had enough pred - that's what I would do and then ask to speak to the rheumy, not a nurse. Or at least - not that nurse.
Thankyou. I have enough Prednisolone so I think that I will try 20 again for a few days to see if the rib pain goes.
It is so useful and reassuring to be in touch with people who have experience of these things. I will try to speak to rheumatologist and get on to GP for more blood tests though I may have to wait a while I think. Thanks again for your time - you must spend ages responding to all of the queries. Much appreciated.
It fits in around a more normal life!!! I am rarely to be found just watching TV ... I watch sport, read the paper, do all the other things you do at home between times.
I had a wild unusual ribcage attack last summer while tapering down to 3mg. I had tried swimming a few laps. It was agonizing. Normally shoulders, collarbones, shoulder blades, back of neck, lower back, hips and sacroiliac. Recent increasing attacks of diverticulitis, also brand new, made me go up to 7.5 for a few days, and wow, what a relief. Decided with my docs to go up from 2.5 to 5mg and just stay there as long as I want.
I started low because I didnt know what it was and we always have prednisone on hand. When I figured it out, I went to 20 which didn't get me through the night unless I split the dose. Unusual situation as I have two top notch internists in my family to advise. No rheumy.
I have seen some mentions of ribcage problems though not many. I just wanted to know if this was a symptom that was just not much reported so thanks for your response.
It is actually all around my ribs and back below bust line like a tight band. I think that it’s muscle spasms because it is helped by warmth of what bag but it is pretty bad.I know that there is something called MS hug but haven’t really had time to explore that one yet!
I agree. I’ve just been diagnosed with costochondritis, after examination. Although the pain spreads somewhat, the ‘epicentre’ is just to left of breast bone, high up. First time I thought I must be having a heart attack…pain very strong & insistent, so took blood pressure & that was fine. As the damage is now done (lifting & twisting with a lawn mower in hands while hubby in hospital thought to be the culprit), it’s taking months to go away. Can’t carry a bag half full of shopping without pain, as an example, so not carrying anything right now! The pain is high up, &, for me anyway, it doesn’t spread round my ribs, or round my back. The pain is very intense, not something you could live with, full time, & definitely not something you could ignore & carry on doing stuff…it stops you in your tracks!! Hoping that may help?! Oh, asthma gives me a lower down hug, & a feeling that you are trying to breathe while somebody is hugging you! The cold weather can cause it, too! S x
My condolences..I've had intermittent attacks of Costochondritis for years..It really is a horrible pain. I use anti inflammatory gel, Voltarol.or Deep Relief, on the point where the rib meets the sternum, although.you can't really rub it in because it's too tender..Have you tried that? It seems to help a bit, although that might be psychological!Good luck
Thanks, I agree,it’s most unpleasant! But I dislocated my knee & damaged tendons in a fall 2 days ago & the inflammatory gel is in use there atm. I can’t take ibuprofen or similar anyway (not just because of steroids) so I’m used to some issues. But the Dr prescribed me a huge tube of ibuprofen gel last week (for costochondritis & swollen ankle & shoulder trouble), but now the leg/knee pain is the worst! I have hypermobility & the Dr said I need to ‘pop the joints back in’ as quickly as possibly, to lessen the swelling….dont think that’s worked…the joint clunked back in, but the swelling swelled!! Ah well, onwards & upwards, S x
That describes exactly what I had at the beginning of my PMR journey. The doctor said mine wasn’t costochondritis, I had looked my symptoms up beforehand but the doctor said not. I couldn’t wear a bra, it felt as though it was restricting my breathing. Mine felt like a MS hug too.
I’ve had it a few times since then, my rib cage feels tight, I thought it was maybe anxiety. So I slowly started taking deep breaths in and long relaxing breaths out. Very slowly at first so it was stretching my rib cage slightly and then over the next few weeks more and more. It worked for me and still does when it happens. I think I must have been breathing very shallow and the long breaths helped me get my breathing back to normal.
I experience the MS hug on a daily basis...no MS. I do have osteoporosis though and much pain comes from the muscles in the back going into spasms. Terribly painful. They also pull on stomach and diaphragm, so sometimes difficult to take deep breaths and eating a regular sized meal is usually not possi.ble. I empathize. I too would try 20 mg again for quite a bit longer, then try to reduce by 2.5 over 4 weeks. Dorset Lady has some excellent tapering plans. I no longer have a rheumy. She was not only useless, but her neglect was pretty dangerous. I now have a GP who knows very little about PMR, GCA, prednisone or much else it would seem. Anyway, all the best to you. This is a wonderfully knowledgeable forum, who will stick by you. xx
Take the executive decision, Spinnie! I've just done same after similar advice from rheumy nurse. Also derived tremendous satisfaction from completing a "how did we do?" questionnaire.
Hi Spinnie. I have suffered with very bad rib cage pain a number of times since I have had PMR. The pain has been really bad on every one of those occasions even to the point of not being able to take a breathe without being in pain. (Although I could breathe normally without any pain if I was lying down and resting). After a thorough examination by a doctor and an x-ray (because I had just recovered from a respitory infection and then covid) I was diagnosed as suffering from costochondritis. Though as PMRpro says, the pain was not all the way around my rib cage, but just under my left breast bone and around the back in the same place. I have had it a number of times, once after coughing continuesly for a month, once after swimming, once after moving some small furniture and once after picking something up off the floor and reaching out sideways. The pain stayed for about three months and gradually went. I was prescribed a naproxyn burst for 5 days on one occasion (although not recommended with PMR) as the pain was so bad. It is a condition that I now dread getting back. I hope that this is helpful for you.
I went to see a physio about ribcage pain during PMR and Pred use. She couldn't be certain but she thought that it might be due to me subconsciously using different muscles (particularly intercostals) to do the things that other muscles would normally do if they weren't affected by the PMR. She gave me a course of physio exercises which helped a little but the pain persisted on and off throughout my PMR. I dreaded a sneeze or a cough - or even laughing!
Re ? Costochondritis. I've had a few bouts just as you describe. It's never been diagnosed as such but can be very painful...almost like having a broken rib. I find over stretching can bring it on and it goes with rest and time. Personally, I've never associated it with a flare. However we're all different.
Hello! I am also one that gets the atypical rib pain..mine is above my waist on the flank and towards the back. Gotta be PMR or some inflammatory condition without a name yet, because everything has been ruled out and the prednisone takes it away. I could not care less what they call it, really, at this point.
Also, I had to take 30 mg for 6 weeks to really feel 99% again..so my point is we are all different. As far as Executive Decisions, I have had to do that a few times. I told them afterwards that it worked. I was "lucky" in that my SED rate actually went UP while on 30 mg..so they "believed" me then. Anyway, do what your gut tells you and if it works, it works and then you have "proof" for them. Also, sounds like your taper was too fast.
Just remember, it is not them in pain..bet they would do the same if they thought it would help them feel better..and you already have proof it did.
I have had this pain occasionally for several years. My chiropractor treats me for my ribs being misaligned. One treatment immediately stops all but a slight residual feeling. And it doesn't recur for quite a long time, sometimes years. I don't think it even has a cause but occurs naturally. Not saying this is your situation but it sure is easy and something to be aware of.
Hi - I experience pain in my ribcage off an on, usually in the front but sometimes it radiates to the back. Mine has been identified as costocondritis - a common condition that causes inflammation of the cartilage that connects your ribs to your breastbone. It's also known as chest wall pain syndrome or costosternal syndrome. I've had PMR for 2 years, and this pain has come and gone and seems to be related to exercise and overuse. I don't see it as being related to PMR, but I'll let the experts debate that. I hope your pain improves - it is very uncomfortable for me when it happens.
I've hurt around my ribcage for 4 years with pmr. At times the pain has been very bad & sometimes not so bad. Seems to be worse in the areas I had shingles (ribcage).
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