No, this has nothing to do with my first girlfriend. I just recently experienced my first flame. Youch! What a horrible week. Now I appreciate what you all are talking about.
I'm fairly recently diagnosed with LVV, with everything having gone pretty smoothly until this week. And, yes, I put it down to tapering too quick. Will bring up the 10% solution with rheumy.
Sorry you had to find out this way. Incidentally these horrible experiences are flares. What form did it take? I have diagnosed LVV but know very little about the typical symptoms. I have GCA as well.
I also have LVV (following PMR) shown in ultrasound scan last autumn. I'm hoping for a consultation soon which will likely be in the form of telephone appointment. After I agreed to Leflunomide I was sent a prescription through the post with no plan or advice. I intend to to ring my rheumy's Secretary next week with the hope that I can at least speak with the rheumy nurse.
That’s naughty not giving you the appropriate guidance. At least you’re on the ball. Leflunomide’s been mentioned to me but holding off for now. Hope all goes well.
We have a dedicated ‘phone line for Rheumie nurses. Ask the secretary if they have one. Secretaries have to do everything it seems fielding all calls plus making appointments now I understand. That’s apart from their usual secretarial duties.
Let me know, once you get going on Leflunomide, hope all does go well.
Thank you for your reply. I've never been given a contact number for a nurse but will put that on my list of queries. I've been on Leflunomide for almost three months and have been fine so far.
The nurses line is what they call a helpline. They have/should have them in all Rheumie departments. They’re managed by Rheumie specialist nurses who can answer most queries. If not they feed back to the Rheumatologist and get back to you.
Thank you. I was interested to read that the Prof was your consultant. He's mine!
At Southend they stopped the nurse helpline and secretaries had to field all calls. Not as efficient even though she was good but wasn’t qualified to answer any questions.
We lived in Southend for 32 years and moved to West Yorkshire to be near family just over a year ago.
I've found the Secretary to be very polite and efficient but as you say she wouldn't be able to give advice, of course. I'll ask if it's possible to have someone ring me. You're in a lovely part of the UK and have a good rheumy.
And I was so nervous about leaving my health care behind but find it’s even better here - have no concerns and we have used it well to say the least - we say if we were paying we’d probably be bankrupt!
Flare - of course. I knew that. Probably just a symptom of the brain fog that was part of the flame ... er, flare.
It can feel like a flame and the brain fog the smoke. Worry not winfong you are not alone.
Fog ... smoke ... flame ... flare. Feeling much better after upping my pred this morning.
Me too, so much better.
I'm also interested in knowing your symptoms. I was diagnosed with LVV but am asymptomatic. Good luck with your rheumy.
I had a PET scan which showed no active LVV - this was reassuring from the GCA perspective. However usual PMR symptoms are still around, stiffness in hips,legs, shoulders, neck arms and back are painful.
I had a flare last year and cannot reduce this second time around. I’ve always suffered withdrawals and didn’t think it could get any worse but it is. I’ve just got to 8mg after a very slow dsns taper.
My Rheumie is concerned I’m heading for adrenal resurgence and would like to help get through the taper. Having gone through it once I know the symptoms and they seem to be emerging already even though it’s too soon. Only briefly but they’re text book to what I know.
Rheumie is a little hesitant to start Leflunomide now. She wants me to feel better than I currently am - In addition have another UTI that’s not responding well to antibiotics.
Might not be a helpful reply but take the bits that might be.
Thank you, Telian. I do understand your rheumy's reluctance to start you on Leflunomide at the present time. I'm sorry you're in pain and the only thing that will manage that is the correct dose of Pred to get on top of the inflammation. I have no PMR pain -on 2.5mg- but don't know what sort of physical reaction to LVV (aortic involvement) might be 'normal' as I'm asymptomatic so I have nothing to measure my progress (or otherwise) against. However, my CRP in two consecutive months of bloods tests has lowered which is encouraging. My hospital is particularly busy at the moment so things move slowly.I hope you get your UTI sorted out soon so that will be one less thing on your plate.
What does LVV stand for ?
Large Vessel Vasculitis
Of course it is...silly me with having it too. Do you have symptoms ?My recent blood test results showed my ESR is down to 2 and CRP is 7.....so really shouldn't be presenting with any pain, but I am, slightly
I have other things going on and always puts a spanner in the works for doctors. The PET scan showed no sign of active LVV - which is good from a GCA perspective and was carried out because of headaches. I do have inactive MS and haven’t spoken with my Neurologist since brain and shoulder MRI except a letter from him saying no changes since last scan and will discuss with me shortly. I also have osteoarthritis in upper body including shoulders. Had 10 surgeries on arms. wrists, elbow, shoulder and hands. It can cause confusion as to where the pain is coming from. To be honest I just try to get on with it from the OA perspective. I’m pleased with the PET scan results and so is my Rheumie who wants to see bloods again. She’s looking at something else now.
So regarding symptoms I’m suffering mainly PMR or a mix of Osteoarthritis? Professor Dasgupta, my previous Rheumie before I moved, always told me symptoms meant more than blood results and to listen to your body. My latest bloods were within normal range - and are to be repeated once I’m off these antibiotics.
You’ll see I’m not the perfect role model but can definitely say don’t put up with any pain too long see your GP/ Rheumie.
Oh my goodness you have been through it. I too have OA and pain in shoulders that went away on the steroids....now returning possibly due to tapering now.
You take care
Anne
That’s the trouble - things develop and we’re unaware until we taper. I had a very painful R arm so not bilateral but the pain only responded to steroids - plus had a flare of pomphilix eczema that again needs steroids. Basically I was on a higher dose pred that wasn’t for the AI ( auto immune) illness. I had to be on minimum 10mg for the arm pain and couldn’t reduce. I’ve been tapering much slower and down to 8mg by .05mg and so far pain is behaving itself. Trouble now is can’t reduce as withdrawals are so bad - the arm pain is hanging in there and in between PMR symptoms have reappeared. Just a nightmare.
Just so awful for you. I get a little under arm pain too, but nothing that bothers me....I think that is the nature of PMR....I can cope with that but GCA frightens me so much with only having the sight in one eye.
The arm pain was so bad I had it x-rayed to eliminate fracture as did knock it twice. It’s gone on from there. I’m under musculoskeletal but, no disrespect, they don’t really know what to do.
You are right to be scared re your eyesight - I’m so sorry - was the sight loss as a result of GCA? Sorry if I should know.
No, sight nothing to do with GCA, but bacterial meningitis back in 1994. Missed by surgery and the hospital, so negligence. And to add insult to injury my GP missed the PMR and was treating me for OA....had to pay £3,000 to get diagnosis and initial treatment. Blood tests privately cost me £600, plus X-ray etc. But now doc has taken over with the Rheumy that diagnosed. Not my current GP that missed the meningitis, but same practice. Just scares me to think had I not paid, and GCA had set in I could have lost my sight completely.
Are you sure it's only withdrawal? Maybe you've passed your "lowest best dose"?
They are withdrawals that I knew but think it’s putting the breaks on for getting lower than 8mg. Which does indicate I’ve reached that point. Thanks Heron.
With any luck it only means a bit of a pause until you can restart a very slow taper. 🍀
At least I’m.confident following the very slow taper - never had to do it this slow before. I will not start another drop
For a couple of weeks or whenever I feel more normal. This is where we all differ. Think you’ll get there the same as I will - at our own pace. Tortoise and Hare scenario.
My sore shoulder morphed over time into current full-blown, lots like early days pre-diagnosis, flare of PMR. Blamed on OA (have actually never had shoulder x-rayed) at first, but now at higher dose of pred the spreading pain has largely gone and now focused on shoulder joint. OA really does confuse things.
As Telian said.
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