Coping with Giant Cell Arteritis

sandy08116, I understand

reducing from 20 mg to 17.5

big deal to me. Good luck, hope

you have a smile on your face

I have one on mine.🙂

I nearly had apoplexy ... "8 tablets" ....glad you clarified! Mine are 25mg and I take 2 (lol) , for GCA and PMR. I'd be taraaring too if I ever get down to that! 💪💪💪💪

On doses like that, I would never make the Olympics!

I barely make it out of the driveway some days. But I'm aiming for the Olympics. Just not this year. 😩

I don't have the moon  face yet, in fact still trying to regain the 9kls lost in 4 months pre diagnosis. At 49kls originally I couldn't afford to lose it but unfortunately it was muscle that flew out the window and hasn't  come back. Just call me Skeletor. It aint pretty. . I've only just started the reduction from 50mg to 37.5 daily for 2.weeks, then it will be 35, then 32.5 etc till rheumatologist finds the dose Incan tolerate without flares from either the GCA or the PMR (I hit the jackpot). It's only been 8 weeks since diagnosed and start of pred and I've been warned I'll be on it 13-18'months minimum. I still have a lot of PMR pain and reduced ability but at least now I can move. It is the GCA that concerns me though...as it does my medical team. Oh well, could be worse.  

As long as you are on enough to manage the GCA symptoms you shouldn't have PMR problems - it is managed by doses well below 20mg for most people.  You are going directly from 50 to 37.5mg? That's a bizarre change and very big - so you may feel it.

Yes, on two x 25 mg tabs originally, after 8 weeks I've now just last Friday reduced to 1 x25 and 1 cut in half, so 12.5mg. =  37.5. That's for the next two weeks then 1x 25mg and 1 5mg for two weeks. The reduction will continue till he finds the lowest dose without the increase in symptoms but I have to say the PMR pain by late afternoon can make me reach for the walking stick, even around the house, as my legs are so weak. Not to mention the semi- frozen shoulder and the nerve damage in both arms from elbow to shoulder. Yet my energy levels on pred at times make me feel 10' tall and bullet proof. Even when I physically stop moving and rest, I can't relax at all. I'll have  "stuff" to do sitting down,  so I don't get bored being still. I've never lost the PMR symptoms, they have just reduced in severity but I tell myself 8 weeks is early days and they have vastly improved in that time. I can now move. I couldn't before. And the PMR was diagnosed first, I didnt have the temporal biopsy for GCA  till after I saw the rheumatologist 6 weeks after the GP started me on pred, which he did even as he arranged my blood tests. Yep, 53 inflammatory result but being on pred and it being the treatment for GCA as well, saved me from GCA complications.  I had all the symptoms of GCA except the painful jaw, it was the only symptom I didn't get. The droopy eye, blurry vision, white lights, temporary loss of peripheral vision, permanent  headache, weight loss, tender scalp...I had it all. Thank God for my GP knowing his stuff I say. 👍

That worries me a bit - at the dose you are on you should have almost no PMR problems at all - the response of PMR to a moderate dose of pred (up to 25mg) is considered a characterisitic of PMR. If you STILL have bad pain on 50mg then he should be asking questions. For many of us there is a 75% improvement with doses well under 30mg - and sometimes in hours. Not 2 months.

If it weren't for the GCA complication I'd say keep a small amount of your pred for about 2 hours before the afternoon pain starts - and see if that helps. In fact - since you are about to reduce such a lot, why not try that with your current dose? 

You read my mind. I was only saying to my husband tonight that by the end of the day I'm looking for extra pain relief and wondered whether to,split the dose..25 mg in the morning and 12.5' in the arvo. I refuse to,take the digesics or Endone I was chewing through for pain relief pre diagnosis ..they only took the edge off anyway, and can tolerate the pain most days unless I'm having a sook. Please don't get me wrong, from where I was to where I am has GREATLY improved, and I did have instant improvement in the first 24  hours on pred. I just still have shoulder restriction and pain and upper arm nerve damage, they burn constantly, plus glute and thigh pain on occasion, which affects my walking. I should have added  I have 3 bulging discs lower back, which on some days adds to the mix. I'm a falls risk I'm told but my two retired nursing sisters.  However 8 weeks ago I couldn't toilet, dress, step, rollover in bed, sit, stand ....move at all really. Totally dependent on my husband. I was kept on the high dose as the symptoms of the PMR were so severe, I was told I was one of the "extreme" cases....and that was before the GCA biopsy, but there isn't much of me to fight the battle, I'm a little pee wee of a thing. I need strength and of course have none. I did...just a few months ago...not  now. I love your advice, I hang on every wonderful suggestion you offer. I do worry that I should be better than I am, but I've always recovered well from anything in the past, (and I've had some weird things) but I was healthy and strong then. 

I've never heard of these...I will investigate, and ask my GP and rheumy. Thank you again Eileen...don't think I could live without you at the moment. You're like my wise owl. 😘

I just googled Nyofascial pain syndrome. 😳. Back in April when I first started getting pain (pain wasn't my first PMR symptoms.just one of many that I didn't know were linked) I thought it was my discs acting up again and went back to my remedial therapist and excercise physiologist I was under the year before, who had implemented an excercise plan to strengthen my core/back etc. I'd have a massage then do a modified excercise plan...this happened weekly,...only after each session I'd be in more pain and he'd modify again.  One of the things I was told to do was get a massage roller and at home "rip up my muscles" by rolling on this roller to "loosen" up before doing my excercises. Stupid me would try, in tears the whole time, thinking it's what I had to do if I wanted to move and not freeze up...but let me tell you the pain this caused in whatever muscles I " rolled"  or " ripped" was off the charts, and getting on the floor to roll was another story. I had to stop and that's when I went to the GP because the pain then turned into the bilateral, whole of body, neck to knee,frozen shoulder blah blah... immobile pain and I gave up treating myself. I'm now after reading about nyofascial , wonder if this is what has caused this continuing pain in that lower glute, hip, front of groin and top of leg area. Because that's the main area I concentrated on " ripping up". 

That sounds like an unecessarily harsh way of dealing with MPS - my physio here was far more targetted and while she suggested using a tennis ball to do much the same thing I can't get it to work. Unfortunately I'd had my allocated number of sessions before she had totally finished - and I can feel it starting to tighten up again. 

But for me - that is what I find. I can deal with the PMR pain and get it to about zero very well but then the MPS raises its head. Buttock pain is often due to the piriformis being particularly involved - and that was the last place she worked on and which wasn't fully "exorcised". I feel your pain - literally!!!!

You should see the size of the roller he had me use! It was long, wide and hard...I had to sit on it and roll back and forward across my glutes while trying to support my body with my arms which   were starting to freeze and develop the nerve damage. Then I had to lay on it on my hip and do the same backward and forward rolling over the hip bone,  which I now know were starting to get the inflammation from this PMR disease. I also had the tennis ball for the shoulders but like you couldn't get it to  work and besides  that the pain in the shoulders plus not being able to extend my arms back stopped that.  All this was to "loosen" up prior to doing the back excercises for the bulging discs. Had no idea at that point it was anything more sinister. Myofascial was never mentioned and I hadn't been to the GP since Feb, so it was before my PMR diagnosis end of May. I still had some allotted sessions with the excercis physiologist left on my plan from the year before, and thinking it was disc related we just modified my excercises each time I went until I wasn't able to do any. That's when I went to the GP as the PMR pain had kicked in. PAIN PAIN PAIN was my life at that point. 

So when you get your MPS pain /issue coming back,  how does your physio treat it? Is it just gentle massage? I've been too scared to go back to the remedial massage guy in case I end up worse after the massage. Remembering I'm still trying to control the PMR pain as well at this point. The last time I saw him he basically asked me not to come back as nothing he was doing was helping and he was concerned there was more going on than my discs....he was right there. 

Not sure I'd describe it as gentle massage - but I suspect if I didn't have PMR she'd be going at it a lot harder! She concentrates on the trigger point areas and does manual mobilisation. At the start the myofascial areas were really sore when she was working on them - but I never had a reaction next day. And the trigger areas are alternated with wider strokes. I'd had 3 sessions of manual mobilisation with the doctor before she said that wasn't going to be enough and wrote up for 10 sessions of massage which expanded to 10+2 which is the maximum you can have at one time on the heathcare system. My GP had also done 2 lots of wet needling back last autumn which had kept me going in the meantime.

Ok thank  you so much yet again. I do have a GP appointment coming up so I will go over this with him. May even just talk to my remedial massage guy again and see what he says.   This "needling" doesn't excite me...had acupuncture in my neck once and I had to ask her to take out one of the needles as it caused a massive ache as soon as it was inserted. I'm sure I'll get all my stuff sorted, I just have to know my limitations at this early stage and keep pushing forward slowly. 

I'd like to know more about it. How it's done, ....if it hurts. 😜 Athough I'm not sure anything could be worse than PMR pain. Just not keen on paun on 

I'd like to know how it's done, what's  involved, how long  before  results are felt et c. I'm still thinking some of my current hip/back/leg pain may be disc related but I really need to stop diagnosing myself. It's what delayed the correct diagnosis in the first place....thinking it was just my discs playing up again. 

Reeceregan, I have had "dry needling done".  My physiotherapist did it over a number of visits.  She said the muscles lining my spine had "bad tone" and were as hard as bricks.  This, of course, I was unaware of.  She said in vulnerable people this kind of muscle spasm can even lead to vertebral fractures.  Anyway, as time went on I found that a constant hip pain I had when walking, and also when lying on my side, went away.  I had no arthritis in my hips, although I do in other joints, and it appears that I was experiencing referred pain from those back muscles.  The treatment was an odd sensation.  Sometimes it was like a pinprick.  Sometimes it was very painful.  Sometimes it felt like a finger was being pressed into my flesh!  The intention is to reset the electrical signals in the muscle and stop it from being in spasm.  Worked for me!  The actual procedure doesn't take more than a few minutes, but as I say she did it over several visits, just targeting a small area each time.

I haven't had the same sort of procedure as Anhaga. Wet needling or "quaddeln" here is repeated subcutanoues injections of a fluid - it can be saline, steroid or local anaesthetic - which forms small blisters - hence the name they use in German. While the needle is in the skin it is excruciatingly painful, burns dreadfully, but only for a few seconds. It isn't unusual to hear the patient squealing! I laugh, much to the doctor's amazement. But my pain clinic lady says there are very very few patients who actually refuse a second session once they have had one - it is so effective. My GP always laughs at me when I ask - or she offers and I jump at the chance.  I know - I'm wierd...

I'm calling a massage place I've found that does all the different types, including the MF release and dry needling. I'll bring them up to speed on my condition and see what they can do. My other fellow was more sports and remedial...he is very good but maybe not what I need right now.  I can only try. 

Thank you, that's most helpful. I will call today and book in I think. 

Ha! Not sure whether you just convinced me to have it done or scared me off!! Love your sense of humour ! ( you were joking about the squealing In pain weren't you ??????😂😂

Darn - where's the edit! Just noticed the typo: Myofascial pain syndrome...

​How silly - I noticed the only tabs are for bold, italics - who cares! (and emoticon and add picture).