Interesting & informative conversation with rheumatology specialist nurse

[Topcar]

I've just been prescribed hydroxychloroquine after my rheumatologist had a meeting with haematology and lymphoma teams over concerns about my blood count and pet/ct scan which revealed diffuse bone marrow infiltration, both of which have now been put down to high doses of steroids!!firstly they thought it may be lupus or worse, so since I am struggling to get below 15mg pred without return of symptoms and I queried why this drug?I was told, now"wait for it" apparently the inflammation is because of my rheumatoid arthritis that was supposedly diagnosed in 2017 after scans & blood tests following foot surgery!!! I remember being briefly told I had arthritis but not rheumatoid arthritis!! "no wonder my feet hurt so much" she said I need an eye test for this drug, to be arranged, and I'll get a follow-up appointment in 6 weeks when they'll review the RA and decide on adding tocilizumab for my GCA in an effort to reduce the pred. She seemed surprised I didn't know about the RA and went on to explain all the conditions are autoimmune sisters and often found together!! I work for NHS and they still never fail to amaze me!! Let's hope something works!!

[MrsNails]

Oh dear, sometimes you are just rendered speechless.......

I hope the change of Meds/Treatment & additional diagnosis improve things for you 🙏🏼 but do you still have GCA symptoms?

[Topcar in reply to MrsNails]

Thanks for your reply, my GCA symptoms are under control at 15mg pred but gradually sneak back when I try to reduce below that, my rheumatologist is quite happy for me to adjust the amount as needed but became concerned when my bloods kept fluctuating hence the decision to add in other drugs!! I'm happy to try anything if it helps, I'd love to start feeling more normal again if that's even possible 🤔🤣

[MrsNails in reply to Topcar]

Wishing you Good Luck with the TCZ getting the Pred down & improving the situation, please keep us updated as to how you get on.

Arthritis is such a ‘throw away’ comment but when it’s RA it’s a different story altogether!

Keep Safe & Well 🍀

[Topcar in reply to MrsNails]

Thanks I'll definitely keep you posted on my progress, it's only taken them 6 months of concern to come up with a plan!! because of covid I suppose, doesn't bear thinking about if it had turned out to be something worse which had been mentioned but was told not to be too concerned until all results were investigated. I also have arthritis in my neck knees left hip and hands I wonder what type they are? 🤣🤔

[DorsetLady PMRGCAuk volunteer in reply to Topcar]

Probably osteoarthritis....that’s most common in those joints.

[PMRpro Ambassador]

And they complain about patients self-diagnosing!!! Are we meant to be psychic? Though the use of the word "arthritis" on its own always annoys me.

Not sure I'd say they are OFTEN found together - in 12 years I've come across maybe half a dozen where the rheumy admits it is both. LORA can present looking like PMR - that isn't the same though,

Now what would be nice is if the tcz works on your RA - though I suspect you have to have "failed" 2 DMARDs to get it for RA. But once you get it, there is no time restriction for its use in RA.

[Topcar in reply to PMRpro]

The rheumatologist mentioned tcz first but since the mdt meeting it's been decided I should try hydroxychloroquine first, I suppose I won't know which condition responds to which drug unless I agree to try them which I am happy to do, fingers crossed something works 🤞

[Longtimer in reply to Topcar]

My sister has RA, tried the drug they suggested to you, it didn`t suit her....but Sulfasalazine has worked wonders....she has a better quality of life than me!.....at least with RA there is a few to try.....good luck...

[Topcar in reply to Longtimer]

I'll write that down to ask about if this doesn't work, Thanks

[Duffer55]

I am 2 and 1/2 years in with PMR dosed down to 4.5. Pred using slow method but achy overall. I had appt with new nurse practitioner who has 18 years experience with mentoring with rheumatologist . Increased pred to 7 mg with relief in about 4 days and then she started me on HCQ for my RA so we will see how that goes. So far so good 2 wks in. Im feeling more active than i have felt in a while

[Topcar in reply to Duffer55]

Started my HCQ today hope my results are as good as yours 🤞

[Jane185]

Hope they told you it can take a while? I have an auto-immune type of osteoarthritis called (for want of a better name - which it really does need) generalised osteoarthritis. It is characterised by pain in the CMCs (thumbs), spine and either hips or knees. I was given a double dose of plaquenil (HCQ) for the first three months then back to 2 x 200 mg ever since. It took about 2 1/2 months to work, and it worked well until a few months ago; now it is not taking care of the pain as well as it used to. I have blood tests every two months to check for liver damage, which it can cause, and also see the eye specialist. The last time he said to me he was going to increase my visits to six-monthly because I had been on plaquenil quite a while (about its limit maybe?) but I must say I have had no side-affects. Pretty sure I read that PMR takes longer to get over when you also have some kind of arthritis.

[Topcar in reply to Jane185]

Thanks for your reply, yes the pharmacist told me it can take up to 6 months before you know whether it is effective, but my rheumatologist will review in 6-8 weeks for signs of improvement, I've learnt to become very patient over the last couple of years especially!! here's hoping for some success and hopefully none or few side effects!!!

[Hosers2]

Top car; I am copying and paste a reply I made to rosemw on another page:

Rosemw,I was diagnosed with PMR last August. Given 15mg for 30 days. Then 12.5mg for 30 days. Then 10mg for 30 days with a plan to reduce it by 1mg per month. That seemed to work for me.

However, I woke one night in January, not being able to see the face of my LED clock with my right eye. Just a black screen. Additionally, vertical lines were wavy and red lights were yellowish.

Subsequently, my Ophthalmologist discovered that I had Macular Degeneration in my right eye. He wanted me off steroids and suggested changing my PMR meds to Hydroxychloroquine. My rheumatologist agreed and started me on HCQ. Instructions was to reduce my Prednisone by 1mg every 5 days, as the HCQ would take two months to really kick in.

I am down to 1mg Prednisone per day and taking 400mn HCQ along with 1mg Folic Acid tablet. She also prescribed 10mg Methotrexate, but only once every seven days.

So far, this has worked, and I am not having any PMR aches or pains (other than some hand stiffness in the early mornings.

I plan on staying on 1mg Prednisone until I am sure the HCQ has kicked in. Neither the Rheumatologist or the Ophthalmologist have indicated how long I will be taking Hydroxychloroquine.

I’ll try to update my progress and successes/failures. Hopefully, the HCQ will work and I can rid myself of the Prednisone all together.

Meanwhile, if you are taking ANY statins for high cholesterol, I would suggest you stop immediately. I am pretty sure my taking Simvistatin five years ago caused my PMR.

O2.25.21 Update: I had blood work done after 30 days of this transition from Prednisone to HCQ. All nine tests say my levels are all in the normal range.

[Topcar in reply to Hosers2]

Thanks for the info, my rheumatologist is aiming to get me down to 10mg pred with the help of HCQ then review and start TCZ to reduce further, my crp never goes under 5 and is sometimes at 10 and my other blood counts fluctuate!! I suspect my pmr started after I was being treated for hand psoriasis (still have the nail pitting but other symptoms have cleared up) gca was diagnosed a year after pmr but their concern is that I gradually get return of pmr pain and gca symptoms and my bloods go haywire when I try to reduce below 15mg pred!! Luckily I've never needed statins or blood thinners, apart from dry eyes which I have drops for and some occasional blurriness my eyes are at present ok. I'll be reviewed with blood tests and consultation in 6-8 weeks and I'm hoping to be lucky and have had some positive improvement by then, although I have been warned it is a slow process and am just taking each step patiently!! I'll Update as any progress is made 🤞