Help please. I have not posted for a while as I have had a very traumatic year and did not know how to express myself. In March one of my granddaughters aged 19 was unexpectedly found dead in her bedroom having hemorrhaged. I have been dealing with my own grief and that of my daughters and her other children's grief as well. I have as mentioned in my previous posts that I have had PMR/GCA for 3 1/2 years and have not managed to get down below 18mg even though I have been tapering slowly for example down from 20 mg to 18mg since May. I started aching last Friday and struggling to do anything so I would like advice about how much should I go back up to again. I took 19 mg Friday then 20mg |Saturday but felt no better and have taken 22mg today. I hate the thought of going back up yet again. Thank you for your support in the past and look forward to more advice if possible.
Help with tapering: Help please. I have not posted... - PMRGCAuk
Help with tapering
Sorry meant help with a flare as well.
I'm so sorry - what an awful experience for the whole family and I'm not surprised you have been struggling.
I think you must go back to the doctor and tell them all this. If you have GCA it is especially important you see your rheumy if you are struggling so much to get the dose down. The stress and sorrow won't have helped.
What dose has been enough in the past? For the moment you could try 25mg - and see how you get on but please please insist on an emergency appointment with your doctors. We can't replace them, especially in such a situation.
Thank you PMRpro for your speedy reply. I have arranged to see my doctor tomorrow so hopefully he can advise on the dosage. I have managed to get down to 18mg recently but not below that and most of the time I have had to be on 20mg. My next appointment with my Rheumy is not till November which I have tried to bring forward and they are going to let me know if they can bring it forward. Thank you again.
I took your advice and saw the doctor today who has arranged to contact the rheumy and had bloods done. I have also upped the pred today. Did have to drag myself to the surgery as felt like I had a serious bout of flu but without the temp etc. Thank you again for your advice. Do not know how I would have coped without the love, support and advice from members of this site.
Sorop
Please do what PMRpro has advised and to morrow make that call, if your GP's surgery has closed today if still open do it now.
I am so sorry for your whole family.
💜
My thoughts are with you and your family. x
I don’t know what to say. My heart goes out to you and your family. Even thinking about your loss makes me cry.
Of course the grief and being strong for everyone is going to impact on your health. I would follow your own sound instincts right now and also talk to your doctor. You express yourself very clearly. Bless you all.
How very sad for you and the family. I've just written a letter to my doctor setting out what I would like (pred, amitriptilyne and my taper regime or lack of for next few weeks) and the personal reasons for so asking. If I saw her, I would be emotional and I don't need that right now. Can't imagine how you are coping and sending sincere condolences.
Thank you all for your kind replies I have made an appointment with my doctor for tomorrow so hopefully I will get some guidance from him. It is difficult to know sometimes what brings on a flare as sometimes it is bottled up stress which in my circumstances could well be the case. I hope you have a successful outcome from your letter Pongo13.
You have true courage Sorop even to get yourself together to see your doctor. Admirable. I also lost a granddaughter very suddenly from peanut allergy. It’s a constant nightmare to see your daughters agony and to want to cope for your daughter knowing that you can only do so much. So you have 2 close people, which is both you and your daughter, to try to help to get on top of such difficult mixed emotions. I have found this site to be pretty marvellous in getting the right advice. I so agree with you about stress being a kickstarter of PMR. This is my third spell of PMR - stress was at the start every single time. If it’s any help I thought, being older, that I wouldn’t survive the sorrow. I did and have come out stronger. I’m sure you will in time. Plus I am able to reinvest in life again. Takes time but I’m sure humans can do this, especially we mothers. Thinking of you.
Thank you so much janimaths and I am so sorry to hear of your loss but grateful that you felt you could share it to be able to give us strength and hope for the future. I hope your latest journey with PMR will have a positive outcome as I am sure it will given your obvious strength. As you say this site is so helpful and supportive. Best wishes for the future.
Thanks for your good wishes. It’s good to read that your medics are shifting and getting the testing done. Hope you feel a bit less exhausted but it’s ups and downs, and we never know when this wretched thing will try to fell us, do we? Today I have had an effective day after four days of lying about weak and drained. . Maybe I’ll have another OK day tomorrow. The good thing is I am now not railing at the steroid and resenting it (own worst enemy) but blessing it for the relief it brings. I so hope you are on your way to licking PMR soon. Best of luck.
Let us know how you get on at the doctors pleasè.xx
Thank you Yellowbell for your concern. Had visit to doctors this morning and they are doing bloods this afternoon to check inflammatory markers and he is going to get in touch with the rheumatology department at hospital to decide on the level of steroids to go to. Had to drag myself to surgery as feel so ill like the flu but they are doing their best and hopefully come up with some answers.
God Bless you and your family. X
❤️
My heart goes out to you and yours. It is a double whammy to suffer and then watch others suffer also. Saying a prayer for all of you right now. Hope you find some relief.
💕 Love and thanks to you all. x
Words seem very inadequate and I can’t imagine what you and your daughter must be going through at the moment. So pleased you were able to get appointment with doctor and you were able to explain your position. Praying you will get the help that you need in the first instance with your medication and the days, months ahead. X Jackie
Such sorrow and sadness! It does effect mind and body. Counseling would be helpful.
My heart goes out to you!
I am so sorry fir your Loss. I will pray for you and your family to have peace and calm.
Feel better soon.🌸
I am so sorry, what a lot you have to cope with. I'm glad you have been able to get a doctor's appointment though.
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