So Where to Now?

[Louisa1840]

Thank you to all of you for all the wonderful replies to my post about the rudest rheumatologist ever!

BUT I am now really stuck because I feel like a dead dog and I simply don't know what to do. I am yoyoing on pred which I know is bad...........

The reason I asked to be referred to a rhuemy was because I had succeeded in getting down to 3 mgs of pred daily & I was feeling pretty pleased with myself. Then I tried, on a slow taper, to drop to two and half mgs. Well that really upset the apple cart and I flared badly. Back up to 10 mgs I went and then dropped to 8 mgs for a week or so.

Now, I am trying to drop to 3 again but feel dreadful even on 5mgs. Everything is aching, I have zero energy, I feel spaced out in the head.

I am wondering if the awful year I have had and all the terrible grief (see my post "How Much Can I bear?") has finally caught up with me? I would so welcome your advice & comments please.

[DorsetLady PMRGCAuk volunteer]

No wonder you feel awful after your year, but would say part of it is probably down to adrenals struggling. Have a look at this -

healthunlocked.com/pmrgcauk...

If you feel dreadful at 5mg, then don’t try to go lower at the moment….maybe try 6mg and give it time to work, whether it’s PMR or adrenals just a little bit more might be enough to steady the ship.

If it’s mainly adrenals that may do if, but if it’s a flare you may need to go up….hopefully not. But you need to give it time, and plenty of TLC.

Once sorted, very slow and steady taper, helps both instances….and if it’s adrenals it’s a matter of time and patience.

[Louisa1840 in reply to DorsetLady]

Thank you Dear Dorset Lady. Your wise counsel is helping to steady this rather creaky old ship!!

[SnazzyD]

Hello, I don’t know what the time periods are involved but on reading it seems like some large Yo-yoing in dose. Yes, hikes for a flare can be quickly reduced but it feels to me your body might be crying out for stability. I don’t know from the PMR side but that kind of dose change would have floored me as I found my body really hated large changes in the status quo. When you went from 3 to 2.5mg, over what time did you do it? At these levels I was taking up to 3-3.5 months to drop 0.5mg. Some drops were smoother than others.

On top of this you are still early days with the losses you experienced. At the best of times (a timely passing in context) loss is hard to accommodate but yours was accompanied by trauma as well. I can’t imagine your adrenal axis is getting a look in because your body has no time to sit with a dose long enough for it to know whether to work or go to sleep. So you will be dealing with a very bruised soul with whatever physical repercussions that has on top of probably poor adrenal function. To me it sounds like a recipe for feeling awful. Did you manage to get any sort of psychological support?

[Louisa1840 in reply to SnazzyD]

Thank you Snazzy this is all very helpful and affirming advice.. I've gone back up to 8mgs this morning as I was feeling DREADFUL. BY now, late afternoon, I am feeling a lot better. I think you are right, I did try to drop to 2 and a half mgs too fast I haven't sought any psychological help for my "bruised soul" ( I liked that!) but I have a retired psycho- therapist friend (in UK) and we email each other several times a week. It is very hard to find any psyche help here, mental health has been so under resourced and we are now reaping the consequence!

[PMRpro Ambassador]

I think you have answered your own question. It was 6 months after OH died that it all hit me like a ton of bricks. And when the anniversary approached things started biting that I had never thought of.

You are not only managing the PMR, you also have stress to deal with - even if it is all behind you, so you think. Then you walk into a meeting like that - no wonder you are struggling. As Snazzy has asked - what support have you had? If you can access bereavement counselling then take every opportunity that is offered whether you think you need it or not. You will be surprised.

I would venture to say you don't NEED a rheumy - and you sure as hell don't need one like her! You need to achieve some stability again now the apple cart is totally upset. To accept the pred is what it is - even if you need to go higher for a bit to get things sorted out. And then, the lower the slower and don't want to get to zero so much that you lose your way along the road.

[Louisa1840 in reply to PMRpro]

Dear Pro, It was your saying that (about the grief not really hitting you for six months or so) that made me think of this. I have had to be so strong and calm for my family perhaps I haven't allowed myself to fall to bits even in a healthy way? Grief is a strange phenomenon. I always think it comes back to bite us on the bum when we least expect it.......

I have gone back up to 8mgs today and feel a lot better apart from a developing cold -GRRRR

Thank you as ever for your wise counsel.

[PMRpro Ambassador in reply to Louisa1840]

"I have had to be so strong and calm for my family perhaps I haven't allowed myself to fall to bits even in a healthy way?"

Why do YOU have to be strong and calm? Calm maybe - but real strength lies in also allowing yourself to grieve. Have you sought counselling? That has been a real saviour.

[jinasc]

Personally I would go back to 8 mgs (where you felt comfortable) and sit there for 4 weeks.

Then use a taper plan either DSNS or Dorset Ladys, using the 1mg drop, if that proves difficult get a pill cutter and try 0.5mg.

Yo-yoing ends up in you taking more pred in the long run so slow down and take it a step at a time. Always remember that both PMR or GCA have minds of their own, they come when they want and go when they want......we just have to manage it the best way we can. All tunnels have lights as the end, we just do not know how long the damn tunnel is.

You have not had a pleasant time lately and both DL and PMRpro have given good advice and you need to give it your attention.

From now on, in the words of another patient, treat yourself like a 'Precious Princess'.

[piglette]

I would go back to the point where you know you feel comfortable probably 8mg. If you felt bad at 5mg don’t even think of dropping further. The trouble is rheumies are not the be all and end all for people with PMR. Below 7mg the adrenals can cause problems too.

[Louisa1840]

Thanks piglette - see above......

[S4ndy]

My hubby was diagnosed with cancer Nov 21 and died August 22. From the time he was diagnosed my Rheumatologist said I was to stay on 5mg and not even try to reduce . He explained how stress could make me flare and warned me to watch out for that and up my dose if needed. My GP has agreed. So I've been I on 5mg now since prior to the pandemic. I've had one flare which needed me to go up to 10mg for a week but I was able to get straight back down. I feel that 5mg is my baseline and have no wish to change that. Grief comes and goes and can take you unawares so glad my Rheumy and GP are so sensible and sensitive. I've been on Pred since 2016 , starting dose 30mg, so looking like I may be one of the longtermers. As Pmrpro said we've all got to die of something and I would rather be out of pain while I still walk this earth than suffer the whole time

[Louisa1840 in reply to S4ndy]

I am so so sorry for the recent loss of your husband & at the same time I lost my grandson too. I can't begin to imagine how one copes with the loss of a beloved life partner. Virtual warm hugs to you.What an understanding GP & rheumy you are lucky enough to have! This will have helped enormously.....

Yes, quality of life is far more important than some mythical low pred dose and each of us must find our own level for our current circumstances.

Thank you and Gods Blessings upon you.

[singingloud]

Take time to heal spiritually, physically and mentally then you can really be there for your family. Failing to grieve can put pressure on the rest of your family to feel they should not grieve and become whole as much as is possible. It says to weep with those who weep and rejoice with those who rejoice. So give your self time to do so. You are worth it. Don’t be alone in it all.

[Louisa1840 in reply to singingloud]

Thank you singingaloud. Yours are wise words! My large family have all been amazing & we have supported each other through these last dark months. We have wept (and laughed) together many times. The support has been so affirming that I now know I need never fear whatever may be ahead because I know they will be there for me. If I could just get over this flare & horrible virus I have got ( I've tested negative for Covid) then I am sure I will have more strength to regain my usually very positive attitude.

[MiloCollie]

great advice from DL. ESPECIALLY around the TLC X

[jls93]

I understand and empathize completely. We all move through our circumstances and do not get to choose many of our lessons.. For me it is post op day 4 on my second shoulder surgery this year and 4th in 3 years ( including reverse total replacement w revisions with atotal hip revision thrown in because the first implant loosened up.. ) . A niece of mine asked my what I do all day because I medically retired, "play golf?". My point is my "job" each day is to pursue my health; to include something for my : spirit, mind and body.. Be gentle with yourself as you move forward. Prayers and blessings to you. Hang in there. Sincerely Jeff

[Louisa1840 in reply to jls93]

Oh all the very best for a speedy recovery Jeff. That's a lot to endure in a short space of time and a huge assault on your body. You presumably also have PMR which wouldn't help with the healing process ......?Your niece (bless her ) would have no idea what you are going through. The only people who do are those on this site plus I am fortunate in having a dear brother who (unluckily for him) also has PMR and we have long WhatsApp chats (moans) from opposite sides of the world.

Concentrating on getting well is your only priority right now. Your holistic attitude including mind, spirit & body is the way to go. I wish you every blessing.

[jls93 in reply to Louisa1840]

Thankyou!