My story so far

This is my first post and story so far........

I was diagnosed with GCA and PMR in July last year after one month's illness. I was put on 40mg of Prednisolone and felt completely well within 36 hours. I folllowed the tapering programme given to me by my Rheumatologist down to 9mg of Prednisolone in March this year with no problems at all along the way. When I reduced to 8mg in April everything changed and I have most of the symptoms I had before diagnosis and some that I didn't have before, the worst being muscle spasms down my side that take my breath away when they happen. Mornings are awful when the symptoms are at their worst, but they do gradually subside by lunchtime and I feel fine by late afternoon, early evening. I went to see GP last week following blood tests, which show my inflammation markers have risen from 4 to 29, which is not as bad as when I was diagnosed. In April my GP suggested increasing Prednisolone to 10g, but this made no difference so she suggested 15mg which I have been on for 2 weeks and it has not made much difference either. I am next due to speak to my GP about my medication on Tuesday and not due to see Rheumotologist until 1st July. From the knowledge I have gained about GCA and PMR, it is likely the only course of action will be to increase Prednisolone and the way I feel at the moment I am tempted to do it myself. I apologise for submitting such a long post, but I am suspecting that this forum is going to be my best support during this challenging journey.

Thank you.

21 Replies

  • Hi Liz,

    Welcome to this forum. Don't worry about the length of your post, most people need to do that first time, so we all know what your problems are, and where they've come from.

    If you've read any of the posts similar to your situation, you can probably guess what most of the answers will be - too fast a reduction, both in time and probably steps.

    The fundamental thing about Pred and GCA or PMR is that the initial inflammation has to be got under control first, and then as we reduce it needs to be kept under control all the time whilst we decrease doses. That's one of the reasons you have blood tests along the way (always assuming your markers were raised at diagnosis, some people never have raised markers), and if they are not at a sensible level you don't reduce.

    A plan of reduction may look good on paper, but it doesn't mean it works out in real life! You have to make sure on each reduction you are okay - no raised markers, no symptoms, and that usually means staying on that level for at least a month to make sure, and not too big a reduction - not more than 10% is recommended. So as you get lower, so the drop gets smaller.

    You may not have shown any symptoms during your reductions, but that doesn't mean that your inflammation was okay, it was obviously building up again at each reduction without you being aware, until it got to the point where something had to give. PMRpro always relates it to a tap dripping into a bucket of water, you don't have a problem until the bucket is full, and then it overflows!

    I would suggest that 20mg might be a good dose to try. When you do get to a dose that settles things down, don't be rushed into decreasing too quickly again. Some people can manage 2.5mg drops down to 10mg, but if you've already had a flare then 1mg a time might be more sensible. I know it sounds like it's going to take for ever, but better slowly that risk having to go up again.

    Good luck when you see your GP next, and see if you can come to a more sensible reduction plan.

  • Thank you so much for responding to my post this morning, I really appreciate it, along with your advice which I have wholeheartedly taken on board and I am so grateful for!! Having read the posts on this forum for the last few weeks your advice comes as no surprise to me that my Prednisolone reduction programme was too quick for me (I forgot to mention that I was actually down to 9mg by December, which was raised to 15mg in January due to a head trauma and then reduced back to 9mg by March) I sense that managing PMR and GCA is going to be really frustrating as well as challenging in that everyone is different and it is more a matter of try it and see if it works for you. I had definitely been lulled into a false sense of security up to March this year as , apart from taking medication life was completely normal. I have really struggled through May and felt so bad this morning that the choice was increase the Prednisolone to 20mg or go to A&E. I will stay on 20mg and, if this works, I will let my GP know on Tuesday and then reassess the tapering programme when I see my Rheumatologist in a few weeks time. I am also due to attend my first GCAPMR Support Group meeting in June, so I am really looking forward to that. Thank you again for your support.

  • Which group?

  • Salisbury, Wiltshire, UK

    It is a new group and the first meeting is on 21st June

  • Good way of putting it, my ESR started to rise as I reduced pred. even before my relapse. but because it was not over 20 GP had just said normal range, no action patsy 69

  • Hi Patsy,

    Trouble is, other things can affect ESR, so a rise is not always PMR. But that should be the 1st consideration if you haven't had a cold or stress of some sort that could make it go up.

    Hope you are feeling a bit better now.

  • I had not had any infections or stress prior to relapse so in retrospect I think I just reduced the preds too quickly. I have felt fine since I went back to 15 for 3 weeks though I am reducing dose again so it is early days. my GP has not suggested seeing anyone else but she did give me a hand out of guidelines and I find this forum really helpful. is it usual not to be referred on in the UK?

    in some ways I prefer not to be referred yet in case I get GCA, in which case I might want whoever is best for the diagnostic procedure. Patsy 69

  • I think it varies. Some more experienced GPs feel they can cope with the illnesses without referral to Rheumy.

    I was referred after my diagnosis, but unfortunately, because of staff shortages it took about 6 months to see one, and I didn't find the Rheumy very helpful, he wasn't the least interested in my GCA, or whether I had PMR previously. According to him, even if I had, it would have burnt out after 2 years! He agreed the reduction plan already agreed between my GP and myself, based on the guidelines. Overall, very dismissive, so I didn't go again.

    Since then, I have changed surgeries, and have a GP who has an interest in rheumatology, so I'm quite happy to take his advice.

  • Having insane body responses on pred some great, others like tightening around my chest...scares me. 1 unnecessary cath is enough to break me down

    cramping hands, hips today....nasty. BIG moon face......still on 30mg today...still no Dr apt January 26th it's seems like years from now. To date,yeast infection,UTI, and herpes personal. Called to inform me the med for the UTI is not working have to purchase another antibiotic.

  • Top experts are of the opinion that the most common cause of flares is reducing too fast or too far.

    Some of the top people feel that all of us should be seen at least once by a rheumatologist. I suppose that is fine if you get an interested rheumy who knows about PMR. If you don't you can be worse off than with a GP who at least cares about whether you are in pain. I have had 2 excellent GPs, one fairly useless one (who failed to diagnose PMR over a period of 5 years of textbook symptoms apart from blood markers) and had the pleasure of 2 hopeless rheumies, one of whom alleged that what I had was OA and the other wanted it to be anything except PMR despite a perfect 6 hour response to 15mg pred. And you have to wait so long for a hospital appointment so a good GP can always start something.

    Remember in much of the world specialists also work out of office-based practices so are often more easily accessed - doesn't always happen of course - and it is expected that it will be a specialist who deals with the more complex medications, especially long term.

  • Bah - the term "normal range" is such a pest! It's MY normal that is important not my neighbour or the bloke in the next town or the other 95% of the population that "normal range" covers! I can only assume many doctors have no idea how it works.

    Our own personal normal is probably the lowest figure you get to with pred - and if it rises, there is increasing inflammation. A single raised value is meaningless, yes, but it should be repeated and the trend followed. If it keeps rising - it is probably a flare. My own personal normal is 4 - it reached the dizzy heights of 7 when I was really bad...

  • Hi Liz 😀,

    I'm also new to this forum. I really feel for you. It is really tough that after the Pred working so well, you have relapsed. There are many positive posts on here and I am told things will get better. It's great to know we're not alone. We will all get through this.

    I hope today is a good day for you 🌞. Take care.


  • Hi Jenny

    Thank you so much for responding to my post this morning, I really appreciate it. I have had other responses too and everyone has been so kind and supportive. It is so good to know that there is someone out there who knows exactly what you are going through.

    Best wishes Liz

  • I'd suggest you may have something else going on too - possibly myofascial pain syndrome (MPS) - which is causing the muscle spasm. It commonly improves at higher doses of pred as it is caused by the same inflammatory substances as PMR but then may return at lower doses although yours is responding slowly still. It can easily be mistaken for PMR symptoms.

    Many of us have benefited greatly from something called Bowen therapy so that might be worth a try. It won't help the PMR but every little helps as they say! It doesn't work for everyone though but if it is going to help you will know within 3 sessions at most. If it hasn't done anything, not a lot of point going further although it is as relaxing as a good massage but gentler on a PMR-raddled body! You have to pay yourself - but you don't have to have a doctor's referral so it is available quickly once you find a practitioner.

    My MPS was dealt with by local steroid injections and a technique called needling as well as manual mobilisation of the trigger points that form in MPS and at the hospital pain clinic - but I don't live in the UK. Needling IS available in the UK and USA but finding somewhere that does it may be difficult.

    But above all - to get from 40mg to 9mg between July and March was very fast and the probable cause of the problems overall. DL has said the rest.

  • Thank you so much for your response, I really appreciate it. I will investigate the symptoms of MPS and see if this relates to me. I have found one reference to chest pain on a GCAPMR website, stating this was rare. I started to get aching in my chest around mid May, which I had never had before and so was cause for alarm. When I visited my GP last week he did not seem at all concerned and didn't even listen to my chest? It does subside by the afternoon/early evening, but it was really bad today and I was getting a lot of spasms down the right side of my rib cage. I am not aware of having done anything to cause a muscle strain and my main exercise is to walk 2-3 miles every day, which I have done since October last year. I do spend a lot of time outside as I have always been very active. Until I was diagnosed with GCA and PMR in July last year, I had only ever had coughs and colds and not many of those. I didn't ever take a pill for anything, so to now have to take so much medication is truly a shock to my system. Thank you, once again, for your support.

    Best wishes Liz

  • MPS leads to the formation of trigger points which are concentrations of inflammatory substances (the same ones that cause PMR) and they can be felt by practitioners (physios and the like, not most doctors) as hard knots in the muscle groups. They occur in pairs on either side of the spine in the shoulders, about rib level and in the lower back. The muscles can go into spasm and nerves in the area can be pinched and that leads to referred pain - which can be into the ribs as well as the low back and legs. From the shoulders it can affect the arms and neck as well as the shoulders.

  • Thank you so much for this information. I will definitely bare it in mind when I speak to my GP next week. I am hoping that by increasing the Prednisolone from 15mg to 20mg today that it wil help alleviate the spasms in the mornings until a diagnosis is confirmed or otherwise.

  • Good luck - fingers crossed it works.

  • Thank you

  • Thank you for posting your story LizMitchell and I am so sorry you're going through this. I was diagnosed last July with GCA after a year of PMR. Lots of good advice has been posted, I just wanted to comment on your chest pain. I didn't have any at diagnosis but when flaring I have abdominal and chest pain. I was checked out by a cardiologist and everything was ok. I know these symptoms aren't as common but they do happen so thought you'd like to hear from someone who has experienced them. I am going to ask for an abdominal MRI to make sure everything is ok there. Best of luck to you! We WILL get through this. 😁


  • Thank you so much for responding to my post and for letting me know that you have experienced something similar, I am really very grateful to you. I know that this forum is going to provide me with the very best support from the people who have actually been or are going through it. I had the worst day yesterday so far and I have taken great comfort from everyone's support, so thank you again for yours. I wish you luck too.

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