PAIN FREE AT LAST – FOR NOW – and Myofascial Pain - my personal journey with GCA
I am 74; was diagnosed May 4th 2015 and started on 60 mg Pred. Now, over 10 months later, I haven’t seen many posts from patients with just GCA - so decided to report my recent progress.
Until very recently it’s been a rocky ride with many months of Myofascial Pain; plus multiple side effects, and withdrawal symptoms, of the steroids. I suspect the MPS may have been triggered by the high initial steroid dosage – over 6 weeks. I’m aware that 60 is the usual starting point for GCA but It was the 6 weeks that gave me cause for concern. I eventually queried it, as I was wondering how long it would be before I was given a reduction schedule. Enter HealthUnlocked – where I basically learned to manage my own dosage – in between 3 monthly appointments with the Rheumatologist. The Rheumy was allocated by the hospital after I had collapsed on May 4th, and GCA was confirmed after a TB. I have a very good Doctor who made himself familiar with GCA after my diagnosis. However, I have had to push for all subsequent appointments with my him as he only works part time – and is now currently on ‘long term sick’ so I haven’t seen him for almost 5 months. I last saw the Rheumy on 29th January. I’m now fully conversant with differentiating between withdrawal symptoms, side effects and early indications of flares. Talk about DIY.
Thankfully I don’t have the complication of PMR as well. From everything I have absorbed know that one milestone of reducing the steroids is reaching 10 mg. Not so far to go if you have PMR but a long way if you started on 60 mg. I reached 10 mg 9 days ago. Prior to that, on reaching 20 mg, taking careful note of all the flares reported on this site, I was extra cautious and did 18 – 17 – 16 – 15 for between between 2 and 3 weeks each depending on how I ‘felt’ my body was adjusting. Then down to 14 for 4 days only (on Rheumy’s advice) before dropping to 12.5 for 2 weeks; then to 10 mg 9 days ago. The latter two drops were at the suggestion of my Rheumy, after my latest blood test results. She suggested 12.5 for 2 weeks then 10 for 2 weeks. After everything I have read here I was sceptical, and don’t always do what I’m told anyway. However, I felt good at the time so decided to try it and she was right – it’s worked out just fine. I haven’t even had any withdrawal symptoms this time (definitely a first). Also – since reaching 15 mg, and after reading posts on this site, I have been splitting the dose, and that is working much better for me. Before someone reminds me – I am aware that I now have to slow the reductions right down and I have the SLOW chart printed off ready.
When MPS first struck I hadn’t any idea what it was so started to research on the www and have printed reams of material off – late night reading in bed. Throughout this journey I have continued to research the (what I initially called ‘nerve-type’ pain) and it fits with Myofascial (MPS). Everything about it fits exactly with my experience. The GOOD NEWS - it has finally (after several months) retreated). So many times I was on the verge of presenting at A&E but then waited it out. Every morning I awoke expecting to be pain-free. This would be the day I would awake and be mobile again – how naive was I ?! Lying in bed I didn’t have any pain at all (provided I lay still and couldn’t believe the pain would still be there !! I confess to being an eternal optimist but, each day I was still almost immobile; and taking 10 minutes to even get upright and to the bathroom. The pain was agonising, and debilitating, when in full thrash. At times I wondered how much pain a body could take. I even considered, but discounted, requesting steroid injections.
Normally I cope with pain quite well, having given birth three times (one of which was ‘continuous labour’). I don’t know the medical name for that but continuous is the operative word there – no respite between contractions. In my day there were no epidurals – just gas and air and put up with it. Naturally that affected the baby’s heart but that’s another story. So I’m no stranger to pain, but at least labour pain has an ‘end’ to it with (usually) a happy result. The MPS continued for almost 5 months, with just a couple of very brief breaks. the longest being 10 days. The good news now – on reducing to 12.5 the MPS started to ease – just a little each day over 2 weeks. On further reducing to 10 it went completely. Having been totally pain-free for well over a week now I feel like doing a little dance as the relief is warm, fuzzy, and otherwise indescribably wonderful. So 10 mg does seem like a huge milestone to me right now.
I do hope that I’m not tempting fate here but am so relieved that I don’t have PMR as well. Again on the MPS pain – I never became used to the way it strikes in a millisecond, but did eventually develop coping mechanisms – depending on where it manifested itself. Not having PMR my pain was always located in my trunk area - anywhere between just above hip level (either or both sides) to top of back across bra line etc – the latter being extra painful when breathing (somewhat necessary !!). It also often moved around during the same day, and from one side to the other. CoCodamol barely touched it and Paracetamol doesn’t work for me. CoCodamol made me constipated, so I dropped that down to 2 in the morning just to get me moving, and grit my teeth for the rest of the day. It got much worse again starting early evening. Finally I decided to just ’tough’ it out: My Dexascan results came back as bones ‘satisfactory’ although it did show 3 spinal fractures. I refused Zoledronate and took the decision to stay well away from any extra Medication. Until 2 weeks ago I did take Vit D3, Magnesium, Omega 3 and Cod Liver Oil. That is now down to just Cod liver Oil and Omega 3. I collected my latest blood results 4 weeks ago and my Rheumatologist was pleased with them - they are ‘perfect’ on all counts (4 pages of them).
I can only speak as I find – not give advice - just tell what is working very well for me. I personally think that taking extra Meds just confuses the immune system. Prior to this GCA my immune system seemed to work very well for me. I was hardly ever under the weather and was very fit for my age. My body has never liked being medicated., so I’ve had very few Meds in my lifetime. My medical notes are even flagged ‘no antibiotics’. It’s bad enough weaning my system off Steroids, without having to get it off a cocktail of other meds. as well.. SOoooo, since reducing to 12.5 I have only been taking the steroids; even leaving out the vitamins - and my body seems really happy with that. In fact it feels ‘normal’ for the first time in 9 months, and that was the starting point of when the pain started to recede ?! Naturally I’ll closely monitor my progress and, should I think that I need Vits again, I’ll take another course. I have a very healthy diet (basically Paleo) aimed at providing the nutrients I need, and have never been one to take vitamins previously. So I was quite surprised (but pleased) with my Dexascan results (bones satisfactory). Must be all the cheese I’ve consumed over the years ! I have broken 3 bones, on 3 separate occasions, since retiring (clumsy in the garden) and they all healed in 5-6 weeks so fractures will do the same. I was always a bit of a cheese freak – although I now have to limit it until I’ve got rid of this steroid tummy fat, dowagers’ hump and moon face. That said I haven't put any weight on and in fact lost 11 kilos when I first started the Paleo diet. What I do have is this ugly steroid fat and, from the side, am shaped like the carapace of a turtle !! Add the moon face - a great look !! NOT. On the bright side – apart from the face the fat is only located on my trunk (I have lovely slim ankles etc).
Anyway, I’m still pretty much housebound – no walks around the block just yet until I build my muscles back up. i am slowly starting to straighten up and walk again now. Not very far, but each day is better and I’ll get there. These past few gorgeous days I have managed to do a little gardening. Not for long, and mainly pruning, but everything seems to be improving suddenly .......... I can now get up off the floor without having to haul myself up the furniture (why is everything always in the bottom kitchen cupboard ?) and can put my knickers on without having to sit down to do it !!
In the early months I suffered sleep loss (3-4 hours a night) but that got better slowly and splitting the Pred. dose hasn’t affected my sleep pattern in the slightest, and I’m now managing 5-6 hours a night, with a nap after lunch .... just sitting upright on the settee. I have never been one for sleeping during the day; but nowadays can be reading a book and just ‘go’. One second, reading the next (it seems) waking up 1-2 hours later.
Last time i made a beef curry (sitting down of course) I identified (on the beef) what must be the ‘sheath’. Yes, I’m back to the MPS again. Being a Jack Spratt it all has to come off anyway. How very fine it is to cause so much pain !! However, now I can understand what it must be like when ‘inflamed’.
It would be interesting to know the ratio of registered GCA patients to PMR ? I do get frustrated sometimes with PMR this and PMR that with so little mention of GCA. Someone was moaning that PMR patients don’t get enough attention and/or publicity – so how do they think we GCA patients feel ?!
Hopefully someone may be interested in my experience so far with GCA as no-one really told me what to expect with just GCA, and what the journey, with steroids, would entail. When I started with MPS no-one told me what it was (even my Rheumy) I had to find out for myself. Myofascial Pain Syndrome doesn’t always accompany GCA, and many people will never (hopefully) experience it – suffice it to say that it does eventually go and, in my book, has been the very worst symptom on the journey (so far). This site has been invaluable in many way, up to a point; but with most of the emphasis on the PMR I am anticipating more about GCA in Kate’s second book.
Does anyone know the publishing date for it ? I have written to ask her but not had a reply as yet.
Apologies foir length of post but it had to make sense, and I have left a lot out.