LVV rears its head and abandoned

[Noraflorence]

I will try to make it succinct but unlikely. Apologies.I saw my consultant 22/01 after 6 month and 6 weeks trying to get her to see me worried about my symptoms . Was fobbed off. I had horrendous diverticulitis on 22 nd and unable to stand/ walk so that impaired on my ability to take in what was said.

Consultant said she was worried about me

a) my inflammatory markers having been <1 for years were 14 early Dec, 46 in early Jan and 46 again mid Jan. ( blood test after appointment 41)started this journey at 58, 4 years ago

b) I have been on steroids for almost 4 years and should be off them. She proposed methotrexate. Said I didn’t want to take this. She stated this was a marvellous drug and has patients taking it for 25 years. No problem she stated

She believes I have LVV. I need a PET scan ASAP. I have had pressure in my head and jaw issues all since mid December. I increased my pred from 3 to 8 now 7 off my own bat. Informed her after doing this.For a PET scan I need to be under 5 but no suggestions as to how to reduce .

Contacted the rheumatology helpline who got back 48 hours later. They were trying to find out details of my appointment nothing written up so far. Would get back re reducing. Heard nothing so far for a couple of days.

Have called in BUPA membership for a second opinion. Only one rheumy locally, East Midlands, who does private work but need a GP referral. I now find ( understandably) that private referrals take up to 28 days for a letter.

I feel abandoned but wonder if I am bring impatient . Any suggestions, advice or reassurance welcome

[PMRpro Ambassador]

Does BUPA cover you for anyone or are there listed names? Would/could you travel further afield? Like Chertsey to Rod Hughes?

Diverticulitis will increase your ESR.

"I have been on steroids for almost 4 years and should be off them" - obviously of the "PMR spontaneously and magically disappears after 2 years" persuasion. Rubbish, it is a MYTH.

"She stated this was a marvellous drug and has patients taking it for 25 years" - for RA. Not PMR. And it isn't always marvellous - a LOT of patients don't tolerate it. However, to be fair, you have to try it to find out if you can and if it works for you - it DOES work brilliantly for some patients.

The only way to reduce - and it won't be that hard if you have been at 3mg for a while - is to stick at the 5mg they want and tolerate the pain in the meantime. And it will be worth it because you will get a good answer as to where on the spectrum of PMR/LVV/GCA you are from a PET-CT.

From my point of view, I think you probably are being a bit impatient. Yes, I do understand how rubbish you feel - I had PMR without anything to manage the pain for 5 years. It is rough, but we are strong women. A PET-CT is the best you will get in terms of diagnosis - it shows all the options unlike anything else. If you can grit your teeth and have it - that really is the best option. Even better than seeing a better rheumy privately unless BUPA will also pay for the PET-CT,

[Noraflorence in reply to PMRpro]

Thank you PMR pro. I will see if I can get to Chertsey I am not too sure how BUPA works out. But again I can investigate . It is good to have a calm voice of reason and knowledge from you. I am one of life’s anxious panikers and have little faith in the consultant rightly or wrongly .Apologies for being impatient. I just heard LVV and reason went out of the window as I know little about it. Saw aneurysm as one possiblity which took me back to my husband dying traumatically of this a few years ago. From what you said going from 7 to 5 should be ok and done in stages or one jump?. I was on 3 mg for only a few weeks but fine on 3.5 for a while.

[PMRpro Ambassador in reply to Noraflorence]

I'm not surprised you panicked with that history - but I discussed aneurysms with Prof Quick the other week and she assured me that thesy are long term problems, not something that is likely to happen in a matter of a month or two. I'm not particularly impressed by your rheumy myself but since she IS sending you for a PET-CT, she is doing the right thing, The PET-CT will see that sort of thing too.

How long have you been at 7mg? Up to 2 weeks you can drop back from even more than that but 2mg shouldn't be a problem.

[Noraflorence in reply to PMRpro]

I have been at 7 mg for about 4 weeks having been at 8 for 2 weeks before that up from 3. I had hoped for some guidance from rheumys. What are your thoughts ?Yes positive about PET scan. Shall try to hang onto that

[DorsetLady PMRGCAuk volunteer in reply to Noraflorence]

I’d drop to 6mg for a couple of weeks, and if okay then down to 5mg. Probably best to stay at that dose until you have sorted things out a bit more…

..and try and stop getting in a panic..easy to say.I know, but not so easy to do, but it doesn’t help in the long run.. 😊

[Noraflorence in reply to DorsetLady]

Thank you sensible advice re panicking will do my best . Will also try the reduction as you suggest.

[PMRpro Ambassador in reply to Noraflorence]

As DL says - if you have time, do it that way, but a few days of feeling ropey isn't likely to be dangerous if you have to hurry it up.

[Noraflorence in reply to PMRpro]

Thanks again. I have no further information on any scan appointment so can just get on with reducing in a hopefully timely way

[Gatorchief in reply to PMRpro]

5mg dose before you can have a PET-CT scan because of steroids? i found this at acrabstracts.org just posting the results. again im just asking about the median dose used in this study?

Results: We evaluated 75 patients, 27 men and 48 women (mean age ± SD: 68.2 ± 10.7 years). PET/CT was performed in 14 steroid-naïve PMR patients (18.7%) and 61 steroid-resistant PMR patients (81.3%). Patients under steroid treatment had received a median dose of Prednisone of 10.0 [5.0-15.0] mg/day during 9.0 [2.0-22.0] months. Vascular 18F-FDG uptake was more frequently detected in steroid-naïve patients. In regard with musculoskeletal 18F-FDG uptake, no statistically significant differences were seen between both groups (TABLE).

Conclusion: Vascular 18F-FDG uptake detection was higher in PMR patients with LVV suspicion who had never received GC. However, PET/CT was also useful to detect vascular involvement in most of the patients under a long-term medium-dose steroid treatment

??

[Noraflorence in reply to Gatorchief]

Thank you for the information very kind of you to pursue it. I think I understand it but my scientific knowledge and understanding of statistics is pretty minimal !

[PMRpro Ambassador in reply to Gatorchief]

Those are long term median doses I think - not the dose at the times of the scan. At the time of the scan the lower the dose the better.

[LemonZest11 in reply to PMRpro]

God you're good. 🙏

[Noraflorence in reply to PMRpro]

Thank you . It is so helpful having someone who can interpret ‘ science’ to lesser mortals

[PMRpro Ambassador in reply to Noraflorence]

Been doing it a long time!!!

[Noraflorence in reply to PMRpro]

Sure we are all grateful thank you

[PMRpro Ambassador in reply to Noraflorence]

DIdn't just mean here - I translated German medical-speak for non-medically qualified audiences for many years to earn a living!!! I really enjoyed it.

[Noraflorence in reply to PMRpro]

What a talented woman.

[Gatorchief in reply to PMRpro]

That’s why I was asking. I see the rheumatologist next Thursday and was going to ask for a PET-scan as most of my pain now is in head , neck, and shoulders( don’t want a biopsy). It’s not severe but is there afternoons now. I started tapering 10 days ago at 12 1/2 mg from 15. I did see my GP yesterday and we talked for about about the tapering and she prescribed the 1mg tablets so that I wouldn’t have to taper so much at one time. She did mention that the ANA test with the two patterns suggested that there might be two issues going on and LVV could be one of them. I did ask about the ANA numbers and weather they get lower if the conditions go into remission and she said they would. We talked about the possibility of a malignancies causing the ANA numbers she said there wasn’t anything active going on now as the ESR and CRP were <3 and below <6. We talked about long term effects and mortality and she thought with past history and present condition and treatments I could do well. Then she asked if I had taken the COVID vaccine? ( it was in my chart from 2021) I told that I had only one Phizer shot and had missed the 2nd one as I was traveling during the time for the second one didn’t seek out a place to get it as my vehicle broke down and it took me a week to fix it. She mentioned long term side effects of MRNA might be linked to autoimmune disease but further studies need to be done? I tested positive for COVID once but we had an issue with PRC tests being 100% positive during that time and my symptoms were very light and no fever or cough and gone in two days. I’m rambling now sorry. My question is can I cut down to 5 mg prednisone for a few days for the scan and not have a crisis after being at 15 mg for 3 months? Like she said, the rheumatologist can answer the in depth questions and schedule the tests. After looking at the autoimmune thread ( lupus, myosotis , LVV , MCTD ect) on this web site, diagnosis and treatment is the key to better out comes. Some of these people are very ill and bed ridden until diagnosis and for many it’s too late for a meaningful treatment and regaining a quality of life. That’s scary because of time it takes to get diagnosed!

[PMRpro Ambassador in reply to Gatorchief]

After only 3 months at 15mg, there will be some adrenal suppression but it shouldn;t take long to recover. Work at Imperial College London expressed the opinion that 2mg is plenty to cover normal adrenal requirements day to day. But you have to be vigilant and watch out for warning signs at any time.

[Gatorchief in reply to PMRpro]

Thank you I push for the PET scan next week.

[Pippah45]

I don't believe there is any "should" about when any of us come off steroids - I have been on much longer than four years and am not being hassled thank goodness because the Rheumy signed me over to doctor years ago and the doctor is happy I am quiet - I think!

[Pippah45 in reply to Pippah45]

I meant to say - that I am afraid I don't know what LVV is?

[PMRpro Ambassador in reply to Pippah45]

Large Vessel Vasculitis - intermediate on the spectrum of disease between PMR at one end and cranial GCA at the other.

[Noraflorence in reply to PMRpro]

That is a surprise to me. I assumed that LVV was the top end after GCA on a spectrum

[Pippah45 in reply to PMRpro]

Thank you - I was in the right area! I think my brother had that or his Rheumy seems to prefer that to GCA.