History of very "Refractory" PMR

[podo]

Although I seldom post since there are others, including the "Aunties" who know much more than I do, I thought it might be instructive to describe my case of long-term PMR.

First Dx'd on the basis of raised Plasma Viscosity in 2003, about four months after retiring from full time work in the Aerospace field. Started with stiffness in right arm (thought to be sports related), moved to other arm, thighs and legs over 2 months. During the process I was given various injections, tried Accupuncture, Chiropracter treatment & dosed with Diclofenac all to no avail! At this point I could barely move my arms, legs bad too although I never stopped walking. Started on 40mg Pred which worked within 24 hours - thought I was a teenager again!

Continued the Diclofenac alongside Pred and was given Alendronic Acid for 2.5 years.

Tapered off Pred in 32 months but symptoms returned 19 months later.

Second course of Pred started at 15mg which again gave instant relief. At this time I had a suspected TIA (turned out to be a Visual Migraine) but during investigations was Dx'd with Glaucoma and started treatment for that as well. My well meaning GP also put me on low dose Asprin which resulted in a Gastric Ulcer, so Omeprozole added to the mix! Tapered off Pred in 16 months but it returned again after 5 months on Zeo Pred.

Third course started on 7.5mg which also worked. Tapered over 20 months and again was off Pred for 4 months. Had a PVD during this time - don't know whether this was related.

Fourth course also started at 7.5mg. Tapered to zero in 19 months and was off Pred for 3 months.

Do you see a pattern starting here??

This time I asked my GP if I could try a gradually increasing dose to see when it kicked-in. Didn't Work! Had to go right up to 17.5 mg before symptoms subsided.

Tapered down to 2mg over a year and then stayed at this level for 18 months until I had a flare. This was the first time that I have had a flare whilst on Pred. This was also the first time since first diagnosis that my CRP was raised (slightly) although I did have a stomach upset at this time which may have confused things. Increased to 15mg and came down faily quickly to 5mg where I stayed for over a year.

At this time I joined pmrgcauk and learnt a lot more about the condition, also started the Salisbury Group where I met lots of interesting people. As a result of research, asked my GP for a referral to Dr Hughes at Chertsey who Dx'd very "Refractory" PMR with possibly some LVV in the earlier stages. He advised that I try to reduce to 2.5mg and stay there although long term 5mg would not be a problem.

BTW, I have never suffered much pain from PMR, only incredible stiffness/lack of movement and also the usual fatigue. Also no weight problems. Apart from the first episode, flares have always been confined to thighs/legs although since I have always restarted Pred promptly this may have helped my upper body.

So here I am currently 4mg which I take as enteric coated, am planning to get off the Omeprozole if I can and will try a slow taper on this in the Spring. Then depending on how I am feeling I may try to get to 3mg over the next year or so.

As I go into my 80th year, I am fighting back! Have joined a Gym, swim regularily and about to try Pilates.

So, hopefully most of you will have a smoother ride than this but even if you are one of the 5% life can go on without too much hassle.

A very Happy New Year to all in the community and especial thanks to the "Aunties".

[Hidden]

Thanks podo it's sad for you having to keep bouncing about but very informative. I went for a look at refractory PMR online to top up my knowledge and hope for best for me but prepare for "worst". I am glad I gave up daily aspirin since dx in June 2016. I think it started at least 2 years before that. You sound like you are up given your experiences. Hope 2018 is better year. 🌻

[Rose54]

Hi

That's some road you have travelled

good luck for 2018

Thank you for sharing

[PMRpro Ambassador]

We've been on the journey about the same amount of time - the first stiffness must have appeared in early 2004 in my shoulders so I couldn't sleep with my arms above my head. But I have never got to zero before a flare although I think a couple of years ago I could have if the overwhelming fatigue hadn't put me off.

But yes - life can go on pretty well if you get your head around it.

[Celtic PMRGCAuk volunteer]

Podo, I’m in awe of such an amazing example of positive thinking in spite of all that has been thrown at you for so very many years. I know several people who have had PMR for a similar number of years but none of them has ever reached remission as you have done. To have had your hopes raised but dashed so many times must have been quite soul-destroying but you have risen above it and even set up one of PMRGCAuk’s groups in support of others. I take my hat off to you. If you hadn’t already mentioned him, I would have recommended Dr Rod Hughes. I do hope that his advice to get to 2.5mg and remain there at least now keeps you on an even keel. If you have any spare time left after all your current exercise pursuits, I can thoroughly recommend Tai Chi. All the very best of good wishes for your health in 2018.🍀

[Sandy1947 in reply to Celtic]

I also recommend Tai Chi/Quigong to the regiment of fellow sufferers! I suffer from intense “gotta goes” ( short attention span) but can actually stick with a 40 minute class. It has a very calming affect.

Podo your story is inspiring. Thanks for sharing the many ugly faces of PMR and it’s vigilant antics! Way to overcome adversity!

[Celtic PMRGCAuk volunteer in reply to Sandy1947]

Sandy, like you, apart from the "calming" effect you mention, I also found Tai Chi had a very energising effect on me on arrival home from each class. Not long-lasting but nevertheless very morale-boosting to give me that short 'fix' and promise of better days to come once through PMR/GCA/steroids and the inevitable fatigue.

[Sandy1947 in reply to Celtic]

Not long lasting is the operative phrase! I so agree but we’ll take what we can get! The same is true for Massage, Zumba, all exercise and chocolate! Good feelings after spending time with family and supportive people last slightly longer but we need another fix shortly thereafter!

[Celtic PMRGCAuk volunteer in reply to Sandy1947]

Sandy - "chocolate"! Now you're talking! Only the dark choc with 70% cocoa solids though for it's anti-inflammatory effect. And I so agree about the "Good feelings" that can be experienced from spending time with loved ones - I often used to recommend a chat and a cuppa with a favourite friend for anyone feeling 'down in the dumps'. And if laughter is on the cards as well, then they do say that is the best medicine.

[Sandy1947 in reply to Celtic]

I go higher than 70% cocoa so I don’t eat too much! It is addictive you know! One square a night is my allocation.

I watch comedy on Netflix. However, I am currently struggling with one so called friend who compares my PMR with that of her male friend who is on a low dose of Pred, is very active and travels all the time. Her comparisons are not helpful but I just say we are all different and men seem to have an easier time with it! My patience muscle is getting stronger but avoidance is my next move!

[Celtic PMRGCAuk volunteer in reply to Sandy1947]

Yes, "avoidance" of such a "so-called friend" sounds the best move! A few years ago, a friend with PMR was having a similarly unhelpful/unkind experience with her friend/neighbour. Many months later, that neighbour was also diagnosed with PMR!!!

[Sandy1947 in reply to Celtic]

That is am amazing turn of events! Thanks for the helpful story.

[Hidden]

Really hope you have a good 2018. You deserve it. Thanks for your bravery, optimism & disappointments of your journey through this illness. Up & down it seems to have been on the pred. ATB.

[SheffieldJane]

Hello Podo, thank you for posting. There is great learning and inspiration in your contribution. I am glad that you are in good hands and I wish you the best of happy healthy New Years. Hats off to you and great respect. Please share again.

[trish29]

Good Morning podo and A Happy New Year. You have an amazing story with Refractory PMR. I take my hat off to you for getting down on the steroids. I to have had a long journey with Refractory PMR and have been on a rollercoaster ride with this autoimmune condition for 13+ years now.I am also with Dr Hughes at Chertsey and in his last letter in October to my GP he states that l have Chronic/ Refractory PMR as well as Osteoarthritis and last year was an unbearable year painwise tying me down to the house. This morning with an early cup of tea l was making my mind up on what l was going to do re my self help.l spend a lot of money on trying to help my pain level. I go Once or twice a month for gentle Bowen Therapy which l will probably have l every 3 weeks because it definitely keeps my migraines at bay,and l also have a wonderful osteopath who understands me and l get gentle ultrasound, she also understands PMR. At the moment l am still on 15/15.05 steroid although in my years with PMR l have been down to 5mg steroid a few times but hurdles get in the way which is usually flares to my legs with cellulitus. My worst pain at the moment is pain in upper arms and shoulders and neck as if i am taped up or in a straight jacket. I am 71 and like every New Year l am determined to fight on, l seem to spend a lot of my time proving myself and saying sorry that l can't do this or that , My other half tries so hard to understand this condition . Without this Forum and also PMR of Chertsey Support Group l wouldn't be anywhere.l know it's true that stress plays a major part with the inflammation and Christmas was stressful with yet another Family Bereavement. I am going to phone my Osteopath this morning to see what she advises, Best wishes to you and to everyone on the Forum.. Better Days and less pain all round please . trish 29

[Sandy1947 in reply to trish29]

You have quite the experience with this illness. It is wonderful that you spend time and energy on your healing. I think PMR is a wake up call to put ourselves first. I understand saying sorry... you can’t do this or that. However, building the “priority muscle” takes a lifetime. I was in NY and set out to go to a neighborhood art gallery. However, I didn’t make it. By the time I did a little shopping and waited in long lines, my energy was zapped and had to have a rest. Disappoint fades, self care trumps!

[Celtic PMRGCAuk volunteer in reply to trish29]

Hello Trish, and, of course, you are one of the "several people" I had in mind in my earlier reply to Podo. At least it's heartening that you have found such help in Bowen therapy and with your osteopath. Please don't waste your valuable time feeling that you have to keep "proving yourself" or saying "sorry" to others - just concentrate on YOU! With regard to your most painful areas at the moment, I found ultrasound, heat treatment and gentle massage the very best for those areas, so perhaps your osteopath could help in this respect when you talk to her this morning. In spite of all that PMR has thrown at you, including having to give up your precious and beautiful knitting, you still have your lovely gentle nature and wonderful smile, and I hope your wish comes true and that you will soon have "Better days and less pain". Keep smiling, Trish!

[trish29 in reply to Celtic]

Thank you Celtic ..Happy New Year to you ,Mike and your Family, Pete and l certainly enjoyed the Christmas Buffet . Thank you for Always being there for me .. trish xxx

[Celtic PMRGCAuk volunteer in reply to trish29]

Thank you, Trish. Good to hear you enjoyed the Christmas 'do! Don't tell anyone but I forgot to pass around the usual Christmas chocs! Still in my bag when I got home (and I haven't got the brain fog of PMR/GCA to blame!) If my memory serves me better, I will bring them to our February meeting! Meanwhile, please let me know how you get on after seeing the osteopath.

[trish29 in reply to Celtic]

Hi again Celtic..lts nice to know that other people get brain fog Steroids or not . I just hate the extra exhaustion at the moment. I have to wait until Saturday to see Reena ( Osteopath) but she is worth waiting for . This Forum really is amazing as today's posts are so interesting , l really have to fight the pain and win through this awful condition .Take care ..trish

[Celtic PMRGCAuk volunteer in reply to trish29]

Hello again Trish, the "extra exhaustion" you mention is not unusual after the stresses (good and bad) of Christmas. I also find that I always feel a bit lethargic/sluggish at this time of year and, for me, I am sure it is because I over-indulge on the wrong foods over the Christmas period. Now trying to get back on track with my healthier diet of plenty of salads, oily fish etc........and a lot LESS chocolate!!! Hope Reena improves things for you on Saturday, Trish.

[Jackoh]

An inspiring post and your determination and positive attitude shines through even though I'm sure at times it must have been so hard. Moral I suppose is that we have to carry on carrying on in the best way we can, learning valuable lessons along the way. Very best wishes for 2018 and thank you again for sharing your journey.

[Carrollee]

Hi podo. Thank you for sharing your "adventures" with the dreaded pmr. I just wondered if at any stage during these reoccurrences of pmr did any rheumatologist suggest or try and push methotrexate on you? My hospital has a passion for it and pushes it on all occasions to the point they don't want to see me again if I won't take it and my journey has been a doddle so far compared to yours (pmr/GCA 3yrs in March and on 81/2mg) with only 2 flares. You only mention steroids. Just interested in others experience with flaring/return of pmr and mtx. All the best cc 🤗

[podo in reply to Carrollee]

Hi Carrollee,

Apart from very early on in my second episode, I never saw a rheumie and my GP let me find my own way with occasional advice. During the latest episode when I asked to be referred to Dr Hughes in Chertsey no mention of MTX was made. On the other hand, several people in my Salisbury group have been pushed onto MTX by the local Rheumie. One of these tolerates it quite well whilst another is going to try to get this changed since it doesn't seem to help him get off the steroids. Salisbury Hospital does seem quite keen on MTX.

[PMRpro Ambassador in reply to podo]

I do wish they could understand that is not very likely to get anyone who only has PMR totally OFF the steroids - at best it may possibly help them manage on a lower dose. But if you are already at a physiological dose it isn't going to do it any faster - your adrenal function is the limiting factor by then. It will help if the person has been misdiagnosed and really has an inflammatory arthritis.

But it is like everything - something a doctor learns at a particular point of their career sticks and persuading them it isn't perhaps as good as they want it to be is almost impossible. Like with alendronic acid or low fat diets!

The really good ones know it is a 50/50 hope at best and pursue a wait and see policy unless they are sure there is something else going on. I'm now seeing Christian Dejaco - whose name is all over PMR at present and worked with Baskhar Dasgupta - he mentioned it and accepted my reasoning of I have a load of medications already for something else and please, I really don't want to add something that isn't more likely to help. I might consider an offer to try Actemra but not keen on anything else.