PAIN FREE AT LAST – FOR NOW – and Myofascial Pain - my personal journey with GCA

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.

(Ozymandias)

[PMRpro Ambassador]

"Epidemiological studies have shown that the incidence of PMR varies, and that this increases with age. ... The estimated prevalence of PMR is 0.5% in people over 50 in North America and as much as 2% in people over 60 in the UK."

For GCA however,

"The annual incidence in northern European countries has been reported to be more than 20 cases per 100,000 people. A United Kingdom study reported an incidence of 22 per 100,000. Scandinavian countries have reported the highest incidence."

In the UK that means there are 2,000 people in every 100,000 who have PMR compared to only about 20 with GCA, a 100-fold difference.

PMR is the most common cause of rheumatic/arthritic symptoms in over 60s, GCA is the most common vasculitis in over 60s but even so, it remains an "orphan disease", the name given to rare diseases.

So there you are. Under the circumstances I'd say there was a fairly good representation of GCA on this forum really!

[Hidden in reply to PMRpro]

I do so agree with you PMRpro - after reading those eye-opening statistics. It isn't surprising then that many medics are unfamiliar with GCA. Many thanks for the Epidemiological study results - will print off and keep.

[Celtic PMRGCAuk volunteer]

Well done on being "pain-free and long may it last. As far as we are aware, although in the final stages, there isn't an actual "publishing date" available for the new GCA guidelines as yet.

[Hidden in reply to Celtic]

Many thanks Celtic - I'll just have to be patient.

[PMRpro Ambassador in reply to Hidden]

If they are as vague as the PMR ones I doubt they'll help crystallise any thinking!

[theresa49]

Hello Ozymandias,

I am so interested in your GCA 'journey'. I also have GCA only and was diagnosed in June 2013 after almost a year with various symptoms.

Over the past 2 and a half years I have suffered the most horrendous side effects from prednisolone, omeprazole, alendronic acid, etc. which I was assured I needed as I am osteoporotic. However, I have 'weaned' myself off omeprazole & taking advice on this forum take a live yogurt daily. After several flares, I am now down to 7.5mg prednisolone but taking it very, very slowly, staying on same dose for at least a month and then reducing on the dead slow nearly stop method by 0.5mg only. This seems to work for me. We are all different, but I can see a light at the end of a long tunnel & you will too. Glad to hear that you are feeling better & able to get about again.

I had never heard of this illness before my diagnosis & my GP had no other patient with it, so we must we 'special' ( that's my excuse).

[jinasc]

I had GCA only for 5 years and have now been in remission for just over 5 years.

You can read the story on pmr-gca-northeast.org.uk.

[Doralouise77]

A wonderful success story, thank you. Sometimes I think nobody walks away from GCA. I was diagnosed last fall after 2 1/5 years of PMR. I cannot seem to taper at all and am having my fourth flare. I am very discouraged, feeling very ill, now have Cushings. My body and soul are broken.

Continued good luck!

[HeronNS in reply to Doralouise77]

Animi, we all have days of darkness. I am sorry that you are so discouraged at the moment. It's all too easy to say, have you tried this, have you tried that, maybe this will help. We all have our own journeys. Let me tell you (in short version) how things changed for me when I was travelling through a dark midlife depression. I used to go for long walks, and felt that there was a fearful black space behind me, like an abyss. One day I thought I would draw a picture of how I felt. So I drew a picture of a seated woman, then as I added the dark space behind I quite suddenly understood that I was drawing a massive tree trunk. This single simple thing caused something to flip in my brain and it was the beginning of healing. May you, too, come to that crossroads where healing begins.

[Doralouise77 in reply to HeronNS]

Thank you for that, I'm glad you found something to help you cope. Hopefully I will too.

[PMRpro Ambassador in reply to Doralouise77]

Four years ago I was totally Cushingoid, it figures at the top of my hospital notes from then - on 20mg Medrol that didn't work for the PMR and only gave me side effects (weight gain in the usual places, a black beard etc, etc). I was switched to a different steroid (prednisone), went on to a reasonably strict low carb diet and started to walk a bit more. I started at about 200 yds on crutches (they were for something else) but that was an achievement. In 2 years I lost 18kg and got to a 30 min walk every morning that had taken 50mins to start with when I first managed the distance. All the Cushings stuff has disappeared, no hamster cheeks, no hump, no balloon gut.

You WILL get there and there are several people on the forums who have walked away in one piece from GCA and pred - just most of them head for the hills and don't look back!

[Nap1]

I i'm very happy for you it sounds like the pain was horrific but you managed to get through this very quickly. I have GCA which was diagnosed in July 2015 and had my first relapse in September so I went from 40 to 30 to 20 and back to 40. I only have GCA but the high doses of Prednisone have been very difficult to deal with because it created many serious and uncomfortable side effects. I hope you stay in remission and your tapering continues as well as it has. If my bloodwork is normal tomorrow I will reduced to 25. Thank you for sharing your journey. Continued good luck.

[Doralouise77 in reply to Nap1]

I too was tapering and doing well, no symptoms, blood work good, tolerated a decrease to 17.5 but at 15 had renal crisis followed by flare. Went up to 30 for a few days and now on 25. What is your tapering schedule like please.

[Hidden in reply to Doralouise77]

Hello Animi

My reduction schedule has probably not been very normal. Because I was on 60 mg for 6 weeks my next reductions were fairly fast – schedule below. However, I did listen to my body each time and didn’t reduce unless I felt physically secure. At 17.5 I thought I was starting with a flare; so upped my dosage ‘just in case’. As it turned out there was no need, as my Rheumatologist pointed out. All I’d had was a little pain in my right temple and had panicked !! Part of my early learning curve. My full schedule to date is below - you can see I LOST several weeks because I didn’t know the difference between withdrawal and flare. I do now.

I now keep medication to the absolute minimum (just the steroids). On diagnosis, and discharge from hospital, I was given a large paper bag with boxes of Prednisolone and 3 other medications – one for bones, another for stomach and the 3rd to counteract nausea. I initially took the one for stomach but soon changed to plain Yoghurt. Figured I’d take a chance with my bones; and never did need the anti-nausea medication. By the second month of my GCA I developed a nasty side-effect of the steroids, which gave me awful pains around my waist and stomach area. I was prescribed Omeprazole, and took that for 6 weeks during which the symptoms got increasingly worse - so I stopped taking it and the problem resolved itself. Later, when I first started with the MPS I was prescribed Amitriptyline – which had no effect on the pain but made me feel ill and sick – so I stopped that as well !! CoCodamol – caused severe constipation, and I was soon in added discomfort – previously I had never had any problem with my bowels. Guess what – I stopped that as well.

My instincts tell me that I am now pain-free partly because I have reduced to 10 mg; but also because I am only taking the Pred. No mixture of Meds to confuse the issue (and my immune system), or interact with each other. My main personal GCA symptoms were – jaw and tongue pain and claudication. Double vision and temporal pain. It’s fairly easy to differentiate between those and any withdrawal symptoms or side effects. I had to take 60 mg of Pred. for almost 3 weeks before the Jaw and Tongue pain and claudication eased, and over 2 weeks before the double vision went.

Anyway, for what it’s worth here is my (somewhat erratic, schedule:

Starting May 4th 2015

60 mg – 6 weeks

50 mg – 2 weeks

40 mg – 1 week

30 mg – 1 week

25 mg – 1 week

22.5 mg – 2 weeks

20 mg - from 15th August 2015 to 3rd September

17.5 mg - from 4th September to 13th (inclusive)

20 mg - from 14th to 24th Sept ***

25 mg - from 25th Sept. to 16th Oct.

*** Suspected flaredue to not knowing the difference between withdrawal, side effects and flares. - so increased the dosage to be on the safe side. Won’t make that mistake again.

October 17th 22.5 mg to Oct 30th (incl) 14 days

October 31st 20 mg to Nov 27th (incl) 28 days

November 28th 18 mg to Dec 11th (incl) 14 days

December 12th 17 mg to Dec 28th (incl) 17 days

December 29th 16 mg to Jan 20th (incl) 23 days

January 21st 15 mg to Feb 15th (incl) 26 days

February 16th 14 mg to Feb 19th 4 days

February 20th 12.5 mg to March 5th (incl) 15 days

March 6th 10 mg to current

Note there isn’t any set pattern. I move on when it feels right. Not very scientific I know but that’s me – rarely do as I’m told.

Maybe it will come back and bite me, as I still have a long way to go. Meanwhile I’m still pain-free (almost 2 weeks now) and I’ll cope with the rest for as long as it takes.

Since March 6th there haven't been any side effects, withdrawal symptoms, or pain of any kind.

[Doralouise77 in reply to Hidden]

(I wrote a reply but I think it went into cyberspace, so I"ll try again and apologize if I've replied twice )

Thank you very much for this ozymandias . I know everyone is unique but it's helpful for me to know what has worked for other people. Some people report being so sensitive to the slightest change. Perhaps I will turn out to be one of them. Unfotunately I do have some difficulty differentiating a flare from a withdrawal.

Back to the drawing board, thanks again , and best of luck for continued success!