A bit of a GCA flare...not bad

[Grammy80]

I know PMPro won't be surprised to hear this....😊

My rheumatologist had been reducing my methylprednisolone quite rapidly compared to most of you...maybe all of you. I can sort of understand why because I was on 125mg of Prednisone for two months and then 68 of methylprednisolone from October 2019 to December 2019 when he started reducing it in coordination with introducing Actemra. My taper program was dropping it by 2 mg every 2-3 weeks except for when I got to 8 mg per day and stayed on that for a month, really felt good. After that, I dropped to 6 mg for two weeks and then to 4 mg.

About the 5th day I was on 4 mg I started to have 'tooth sensitivity', I called it but that next morning when I went to eat breakfast ..it hurt to chew. I recognized it immediately and a few things came to mind. I had been having blurry vision in my right eye..and just kept switching my glasses around. I have six pairs I use. No matter what I tried..my vision wasn't clear or sharp. Some glasses have a black left lens...I was trying everything but chalked it up to medicine taper.

There was a Dr. visit set up for April 9 and at that time I explained all to him. Now I am back up to 6, no problem for me, but for a month. After that he wants me to drop it to 4 again, but keep it at that for a month. I'm kind of thinking I may ask him to get me a script for 1 mg tablets and just drop by 1 per month. I know most of you have tapers that you only drop by .05. Maybe he has been a bit more aggressive because I give myself a shot of Actemra each week? I've had a history of bleeding ulcers (some years ago) and diverticulitis and I take anticonvulsants (no seizure for 45 years).

Any of you who have read my posts in the past know that I'm not interested in striving to get to -0-. At my age and with my interests I just want to feel good each day...max it out..you know what I mean.

My jaw feels fine now and the entire journey I've not had the return of head pain...just losing it that's all, not bald yet!!!

My biggest problem right now...it motivation. We are all overwhelmed to a degree with isolation and the virus. I always enjoyed time in my apartment by myself to read, listen to books, paint, photography...but I am so saddened when I see the news, the numbers, the lack of testing and leadership here, I feel like I have a rock in my stomach. I have to do something to help and the most I can do is send cards, e-cards and phone calls to other folks in the same boat.

One thing I can do is set time every day to come on this forum...and take a walk with you each day, all sisters (with an occasional brother) on the same walk.👩🏽‍🦳👲🏽👱🏽‍♀️👩🏽‍🦰🧑🏽👧🏽👦🏽🧒🏽👶🏽(When I right click for my emoji's..it is blank...I click, click and this was the best I could do for the FORUM~! <3 <3

xo

[PMRpro Ambassador]

Just check with him that he does realise that not all patients get off corticosteroids altogether despite Actemra! Some still need a low dose - it was obvious from the clinical trials.

I really do hate having to say I told you so ... Never mind - better luck next time.

[Grammy80 in reply to PMRpro]

Hey there...you were indeed right but until I hit 4 mg I had no issue....but now I'm 'doin' it the UK way'....if it works for the forum...it works for me. I'm building up a good supply of prednisolone too....so I can be more independent. xxoo Thanks

[Constance13 in reply to Grammy80]

Morning Grammy.😎

I've been on 4 mg for about 18 months - 4 seems to be a sticking point for quite a few of us. Dr has informed me I will probably be on it for life. Suits me!

[Grammy80 in reply to Constance13]

Thanks so much Constance! Taking some is fine with me...when I got down to 16 mg per day...I wondered how low I would go...I think I may have found out. Be well..and thanks!

[jinasc]

If I were you I would stick with the 6mg and just leave it, till all this has settled down. Yo-yoing is not good, 6mg is not a lot in thegreat scheme of things and anyway, before you get further down, tell him you want a synacthen test to see if your adrenals glands are beginning to wake up. The test can be done at 7.5mg and below..........above that level, as far as I am aware, the test does not work.

I had GCA for 5 years and was 75 when it went into remission (now 82 in a couple of weeks time). My Consultant was very reluctant however the Tabul study was around at that time and he arranged with a colleague to do the ultrasound (which really is to replace the biopsy at the initial stage) not an end result - there was no halo. Before we started the drop a synacthen test and the adrenal glans had woken up and were beginning to get cracking. It took a year for them to get up to speed. So slowly down to 1mg and then stopped. but I would have been quite happy to stay on 5 or 6mg for life.

Now remember, that is me and we are all different.

[Jantayl in reply to jinasc]

Good to read your story. I was diagnosed with GCA Feb 2018 - PMR Nov 2017. Started at 60mg - now down to 4.5mg - taking it slowly but feeling very nervous at each drop. Have various slight ‘niggles’ and do feel tired in the evening. ..but still walk 5,6,7 miles daily even during this ‘lockdown’ - I live in a very rural area. Recent appt with rheumatologist was cancelled so miss the advice on continuing the taper. I did have a blood test which indicated increased CRP level to 6.8 from 0.5 in Dec 2019 but told this is in ‘normal’ range. I am due to go down to 4mg in May and I shall keep trying and hope symptoms don’t return.

Thanks - I do find this forum so very helpful in coping

[Grammy80 in reply to jinasc]

Thank you so very much...how did I miss this? So thankful I saw it. I plan on calling the rheumy tomorrow. When I saw the ophthalmologist today...there is no improving the vision in my right (only) eye, which she attributed to the GCA. I was so taken back I didn't ask her if it was recent damage or from last August. I feel the same way you do about the meds...if the damage to my right eye is from these past few weeks, I'm thinking I'd like to go back to 8mg since I still have some jaw sensitivity. I'll also check on synacthen test. Again...thanks

[scats]

Let me do it for you 👩🏼‍🤝‍🧑🏻👩🏼‍🤝‍🧑🏼👩🏼‍🤝‍🧑🏽👩🏼‍🤝‍🧑🏾👩🏻‍🤝‍🧑🏿👩🏻‍🤝‍🧑🏾👩🏻‍🤝‍🧑🏽👩🏻‍🤝‍🧑🏼👩🏽‍🤝‍🧑🏾👩🏽‍🤝‍🧑🏿👩🏾‍🤝‍🧑🏼👫👩🏿‍🤝‍👩🏼👩🏿‍🤝‍👩🏾

[Grammy80 in reply to scats]

Thanks, scats...you're the best!!! Computer is getting a mind of its own, thanks for the cover! <3

[scats in reply to Grammy80]

You're welcome. I can't help with GCA but I can let you know we're still here for you. Hope things go well at this difficult time.

[Grammy80 in reply to scats]

....oh, you are a big help~! l)

[alvertta in reply to scats]

Wow.

[Luciejc]

When I went to my new rheumatologist on Feb. 19th I was at 12.5 mg prednisone. Decided then to go with Actemra. She did not begin to lower my prednisone until I was on Actemra for 5 weeks. I'm at 11mg now and will be going down 1 mg. very 2 weeks. I was hoping that Actemra kept flares from happening, but I guess not. Asking for 1 mg tablets would be helpful and give you more control. Good luck my friend!

[Grammy80 in reply to Luciejc]

Thanks, the way I look at it....I believe I heard it from several people on this wonderful forum...there is no cure, just management. Personally, I don't think I'll ever be off completely. It took Prednisone, Methylprednisolone and Actemra to get me to this point since August 5, 2019, plus three stints where I got 1000mg IV per day. Honestly, Jean (for me), I just want to feel as good as I can and if I have to pop some steroids...that is OK. I have one friend who has been taking 1 mg for 11 years...she just could not come off.

I'm happy to hear you are doing so well....PMPro told me it was a fast taper...and it was fine until 4 mg....she was right! The doctor agreed, however, when I suggested monthly reduction. I KNOW I don't speak up enough...but I'll improve..

[Hidden in reply to Grammy80]

I am not sure many of us speak up, especially if we have had a lifetime of just taking the medicine literally and metaphorically. I wish actemra had 100% success rate for GCA but know it isn't always, and after 12months I think people were still on some pred. I think having a stash of 1mg is wise. That way 0.5mg can be done. Fingers crossed your "mini flare" settles. I have been rumbling around 6 or 7mg for 18mths with PMR. Still having the occasional flare and hoping they settle for both of us. I can't see 4 weeks at your current dose being much harm at this stage!🌻👍

[Grammy80 in reply to Hidden]

Just a twinge in the old jaw, now and then. I loved 'literally and metaphorically'....sometimes I don't know if I have another affliction or am having a reaction to a medication...true? Haha I really felt the best, so far, at 8 mg....I'm getting a proper UK attitude about this and may just up it if the jaw doesn't quiet down...or I may up it anyway. How is that for attitude? xo

[SheffieldJane]

Bless you! Sending you big loves, you are not alone! Xxxxx

[Grammy80 in reply to SheffieldJane]

Aw, thanks Jane. I've had very little discomfort since I increased it. You are a lamb...stay well.

[SheffieldJane]

♥️🕊

[Luciejc]

Marilyn, and all of you who have responded to GCA postings, I want to thank all of you. I don't know where I would be if it weren't for your sharing experiences, words of wisdom and support. NO ONE else could possibly understand what this illness is all about. Love you all, especially you Grammy80!

[Grammy80 in reply to Luciejc]

I know Jean...until I found the Forum, I had way more questions than answers and felt as though I was standing on Mars...alone. Not only does the Forum offer understanding...shared understanding, but hope and a positive attitude. Some of these gals are dealing with SO much~! You've heard the story...I cried because I had no shoes until I saw the man who had no feet. There~ you have what is in my heart~!

[Marlenec]

Best wishes to you Grammy, stay safe and in good spirits.🌻❤️

[Hidden]

Hi Grammy, so sorry to read you've had a set-back. Do you think by any chance that it's the Pred causing your eye probs and not GCA showing it's ugly head again. However, I'm still getting a slightly tender head on both sides when I touch it...jaw discomfort too at times. All I know is that my eyes are fine when I first get up in the mornings but within an hour after taking what now is 25 mg of Pred my eyes start to go blurry and remain that way all day. I'm supposed to be reducing on the 25th April down to 20 mg for 2 weeks again, but wondering if I should remain on the 25 mg for the month, then slowly taper by either 2.5 mg or 2 mg. So hard to know what to do for the best when the Pred is causing a problem. Weight started to pile on too and face is getting fuller and feeling a bit down in the dumps and teary too. Not due to lock-down as seem to be coping with that pretty well.

When I feel a bit down, which I'm sure is due to the Pred I think of all those poor families stuck in tiny flats with children and some with abusive partners too...how hard it must be for those people. Watching Terry Waite's interview this morning on Good Morning Britain imagine he was chained to a radiator for 5 yrs.....what staying power that man had !!

[Jackoh in reply to Hidden]

Yes seeing and imagining what some folk are going through at this moment can sometimes help us put things into perspective. Xx

[Grammy80 in reply to Jackoh]

So true, indeed~!!

[Grammy80 in reply to Hidden]

I agree....give yourself a hug and rest, be good to yourself. The road will get smoother. I sent you a message....correction, a book!!!

[Thelmarina in reply to Hidden]

Blurry eyes - sometimes quite slitty! - have been a constant with me until getting down to 8.5 Pred. I also use Blephaclean wipes to cleanse my eyelids and inner lids each day followed by drops for dry eye which I use two or three times a day. My actual eyesight wasn’t affected at all and I have regular check ups to make sure for my peace of mind! So hang in there! 🌺

[Grammy80 in reply to Thelmarina]

A few amazing points there, Thelmarina! Cleaning your eyelids? Really? How do you do that? Is there a YouTube video maybe? I don't think I've heard of Blephaclean wipes...I though you were going to say you cleaned your glasses!

Also....the ophthalmologist did give me a prescription for dry eyes. I had drops from her before but was very 'senior' about it. I moved the drops to my bedroom where I pop my glasses and hearing aids each night (still have my own teeth) to improve my memory...it didn't work but yesterday's visit will make me remember. Thanks

[Jackoh]

Yes echo that we all gain so much from this forum. 💕

[PMR2011]

Hi Grammy80, first it took me a full year to go from 20mg of Pred to zero once I started Actemra. So I agree with you, no hurry!

Second, hoping this will help with the outlook on life right now (if the link doesn’t work, just search for SGN on you tube, it stands for Some Good News.

youtube.com/watch?v=Eg08rJG...(Not working as expected?)

[Grammy80 in reply to PMR2011]

That is great...and I just love him. This was so kind and thoughtful. Not only does the virus and the many ways in which it touches families help ANYONE put things in perspective, but I have a friend whose 42-year-old son has the virus and her son-in-law has melanoma, and it has gone to his bones. When I think of that....I truly am a very fortunate person. My heart hurts for those parents and their families.

Sure, with one eye it wasn't exactly what I wanted to hear....but I have many things to be VERY thankful for.

Now I have Good News at my fingertips~!!

[Grammy80 in reply to PMR2011]

Sorry, PMR2011, I responded....with today's ophthalmic visit on my mind... your advice and spirit about the meds is in lockstep with mine....but I sure appreciate the boost and caring. xo