I have read a few things which have all been really helpful and has made me wonder if some of the things I am experiencing are pred symptoms and others not. I am likely repeating what others have already asked, for which I apologise in advance. Some may already have been answered, in which case ignore me!
1. Extreme dizziness if I so much as look up, tip my head back (ie in the dentist chair) or lie down for pilates, I struggle getting up after. The room spins and I just have to wait it out.
2. Muscle pain, mainly my bum, and a weak right leg (which is longer than my left) but after falling in the forest last Wed, I am back to hardly being able to walk.
3. Random pain at night that attacks digits. Fingers or toes. Not often, maybe four times in the past 3 months, but extremely painful and wakes me up, but in the morning, no pain.
4. Eyesight. Some days blurrier than others, and sometimes I am unsure if it is just floaters. Frequent eye infections, guessing likely from Pred and TCZ. Have had dry eyes for many years.
5. I am doing the Dorset Lady slow taper, and have started my first week of going from 10 to 9. Get a 4 o’clock slump, and some symptoms, mainly nasty pressure in my head and tender neck and along shoulder. Thinking I just need to ride this out and see how I am next week?
6. I have a blotchy ‘necklace’ at the base of my neck that has been there since pre diagnosis, also spotted by the registrar during my endless investigations. Could this be from the LVV?
Once again, my usual long post, with huge apologies. You are all fab! Thanks in advance.
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Sophiestree
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I can really empathise Sophiestree. I have been wondering if some of the symptoms you describe are Tocilizumab side effects. My Rheumatologist thinks that they are my GCA/LVV. I share dizziness, difficulty walking, finger and foot pain and limb weakness. I have 12 weeks left of Tocilizumab and am persevering but I have seldom felt worse. I have difficulty reducing from 10 mgs to 9 mgs of Pred and experience head pain and breathlessness. I would quit the Tocilizumab but I have high blood pressure, blood sugar and cataracts from Pred and as I say, my Rheumatologist does not think that this is Tocilizumab. I am extremely exhausted and pretty confused. So this is not advice just commiserations.
That's interesting about the finger and foot pain. Is that at random times like me? The brain fog is also so frustrating... I'm self employed and stopped all work last summer. I have just started to do the odd day, albeit wiped out the following day, but sometimes I look down at things that are so familiar to me, and they just don't register at all.Right now it's from my fall and the pain is pretty rubbish. It will be interesting to see how you are when you do finish the TCZ but I guess you won't know that quickly.
Definitely brain fog. I forget entire films that I have watched very recently for instance. The foot pain is at the end of the day and maybe related to my long-standing Psoriasis . The finger pain is more random. Worryingly my Rheumatologist doesn’t set a great deal of store by the many side effects listed for Tocilizumab because they are constantly being added to by individuals on the Yellow Card scheme. I feel such a hypochondriac listing so many apparently unrelated symptoms. Doctors don’t seem to respond to it either, I just feel my credibility slipping away. I think I compound the problems because my motivation to restore physical fitness has disappeared.. I expect my poor walking is related to that. I experienced very few problems with PMR controlled by Pred. I am hoping that time and completing my year of Tocilizumab will have achieved something.
Absolutely. I am not quite in the state of mania that I was at the start, but I think three big doses of pred iv (1000mg) sent me all over the place... never quite left me in terms of how I felt then, including abandoned by the medics as they just felt they'd done their job. My poor GP got weekly letters. I'm a little more restrained now 😂
There is a lot about PMR of which the doctors are oblivious - I do my best with the cohort of research bods I am in contact with but there isn't any money for the studies.
I'd vote for the vasculitis - except for the dizziness which could be BPPV (benign paroxysmal positional vertigo) which seems to be not uncommon amongst PMR/GCA patients.
And the start of adrenal function needing to wake up. It does start at higher doses (nearer 10mg than 5mg) in some people - probably people who absorb less of their oral dose of pred.
I developed a reddened decolletee with PMR which returns once I'm out in the sun a lot wearing a low necked t-shirt. Pred improved it quite a bit.
Ah that's interesting, I guess if it's not something I've had before, there's not much else it can be. Sadly I have made my muscle pain after falling flat on my bum worse by attempting very gentle pilates moves.. and now I'm doing your ibuprofen flooding dose and sitting on a heat pad.My mottled 'necklace ' hasn't changed really, but as you never actually see doctors, it's impossible to ask. Is that a LVV thing then?
I might ask my sister to try the Epley movement and see that helps.
A fall can be enough to cause a flare! Even a medical paper about it
I don't know if it is specifically LVV, I've heard it mentioned quite often over the years.
I get the finger pain - but not at night, it is tendonitis/synovitis and was a major part of my PMR originally. Just happens with certain movements - my RH middle finger was protesting earlier, can't feel it now! It is a bizarre disorder!
Ah that's good to know. It's so random for me and always when I'm sleeping which wakes me up. One time it felt like someone had dropped a block of concrete on my foot. It was so painful. Wake up in the morning and nothing 🤷♂️
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