Sadness plus: Diagnosed with gca in April 201... - PMRGCAuk

PMRGCAuk

21,228 members40,251 posts

Sadness plus

Spanky2019 profile image
19 Replies

Diagnosed with gca in April 2019. Have gone from 80 mg to 15.mg. I've been sad off & on over the months. Like everyone else I miss not being able to do all the things I loved to do. I think since going down on prednisone from 20 then 17.5 for 30 days & now 15 mg for 30 days I am more then just sad. Have to say I'm depressed - is that common with tapering & is it possible I'll feel something totally different at 12.5 or 10 mg. I do have other major health stuff which I'm adjusting to but can't stand depressive feeling. Really, really don't want to add another rx. Just maybe need to hear others experience this. My inner child has come out from this gca, and probably from prednisone (I thank & blame everything on prednisone). Feel like I can't shove that sad little person back in because she just wants to play and do all the things she got good at all her life.

Written by
Spanky2019 profile image
Spanky2019
To view profiles and participate in discussions please or .
Read more about...
19 Replies
SheffieldJane profile image
SheffieldJane

What a sweet sad post Spanky, I am sorry that you have been enduring these sad feelings for so long. They are perfectly understandable and shared by many of us on here. The conditions themselves, the pain, the fatigue, side effects of Pred alone will do it. The feeling of life passing us by and very real grief for the life we used to have. You must let that sad little person out to play and never try to shove her back in again. I recommend that you get a good therapist whom you trust - most will give a free taster session and start working on ways that your inner child can play again and lead her out into the sunshine from the trap of this lowering disease. Sending you a big hug. Keep talking. The way you describe this shows how insightful you are and how receptive to good wise therapy you will be.

Spanky2019 profile image
Spanky2019 in reply toSheffieldJane

Posting all these months makes me feel like you're all friends. Thank you!

SheffieldJane profile image
SheffieldJane in reply toSpanky2019

We are. ♥️

Megams profile image
Megams in reply toSheffieldJane

~Beautifully articulated SheffieldJane :) :)

Hi spanky, it's a tough old year for you isn't it. You aren't alone and play time is just around the corner. There's no point fighting that low depressive feeling. It's going to be there but will pass.... It may be a visitor that pops in for a coffee every so often. Just make sure it's just for coffee! It's frustrating not being able to being that warrior but warriors are only kept silent for a while. If you think about how absolutely terrible you felt a few months ago you have improved. There have been a few bumps in the road but you are getting there. Stay strong and take it one day at a time. 💜

Spanky2019 profile image
Spanky2019 in reply to

You've been such a great support through this. Thank you!

PMRpro profile image
PMRproAmbassador

Even in the pit of your depression I hope you can hold on to the positives of this year: to get to 15mg as you have has been really good. On the other hand - it has probably taken the 6 months for it to sink in that you have had an episode of a serious systemic illness that isn't going to go away altogether just yet. I speak from experience!

You need to talk to your GP and be up-front about how you feel. Even just talking about your feelings to someone who understands the mental health aspect does help - again, I'm speaking from experience. Talking about here is a start - take it further.

Spanky2019 profile image
Spanky2019 in reply toPMRpro

Thank you Pmrpro. It has been a roller coaster with a lot of serious illness, most of which doesn't have a cure. Think prednisone is big part of this. I think 80 mg to 15 mg in 7 months is fast taper. Dr has slowed it down now. But grieving the losses is also factor. Still look forward to each day. Main problem is crying so easily several times a day, and that's not me. Again, thanks as always.

ledgemoorlady profile image
ledgemoorlady

I really do sympathise! I have chronic depression and SAD,and the latter is causing all the usual Autumn symptoms just now. I cope by dividing my day into blocks of time, never looking at a total day, except in retrospect. I decide what I will do my best to achieve, using SMART objectives and when one is under my belt, I reward myself for the max time I can spare with a session with my feet up and either a book or TV. It'sthe old carrot and stick, but for me it works. The feet up also works nicely to help iron out the pain.

Don't turn your back entirely on pharmaceutical help. I nearly had a fit when the GP told me a good while back I'd have to be on anti depressants for the rest of my life. I've tried to come off a couple of times, but had to go back. After all, if you were diabetic, thyroid or heart disease, you'd have to take medication all the time, so what is the difference? I wouldn't still be here I think, if I'd had to struggle without my Prozac! I always recall talking to someone with depression who said she did not want to take anti depressants as she didn't want to become a zombie. I asked if she felt I was zombified, and she replied of course not. I won her round by telling her that I'd been on them for years! What can't be cured must be endured, but always give a cure or at least an improvement, a chance before dismissing the idea!

Bon Courage!

Ledgemoorlady

Spanky2019 profile image
Spanky2019 in reply toledgemoorlady

Thank you so much.

Purple-Owl profile image
Purple-Owl

Don't forget that one of the side effects listed for Prednisalone is having suicidal feelings.

S4ndy profile image
S4ndy

I agree with everything that has been said by others above.

I have experienced the very same thing. The hurt, bitter and sad little girl surfaced along with the PMR. I had been "coping" with other health conditions prior to that but when PMR joined the party the little girl stamped her feet and refused to play any more except with her big black dog of depression.

I spoke to my GP and she changed my antidepressant and gradually increased the dose. After about six weeks I started to be less sad and tearful. I could not afford a therapist and the NHS was unable to provide a timely therapy service as the wait was about 12 months for talk therapy.

I am a practising Buddhist and lucky enough to have a really good teacher who helped me through this period of loss. Talking and meditation helped me. I also read "Reconciliation: Healing your inner child" by Thich Nhat Hanh which I found very comforting.

I have over the last 3 years since my PMR diagnosis allowed my inner child to surface which was very painful, then learned to nurture her and treat her with kindness. She's still with me and the black dog surfaces too sometimes but she's now a much happier little girl who has learned to accept joy and contentment and leave the past behind. It's not easy and the prednisolone certainly didn't help but as the dose came down it was much better. I am now on 4mg and that little girl and her dog are much much happier.

Do hope you find a way to nurture your inner child ❤️🙏💐

Spanky2019 profile image
Spanky2019

Thank you so much for sharing. It is helpful.

Portobello profile image
Portobello

Dear Spanky- PMR finally diagnosed for me in July and I am constantly visited by these periods of the blues. Feelings have been strongest this last week or so. Maybe it's the constant rain and because it's autumn and the dying of the year?? My own mortality feel very real. Please, keep on keeping on, we've got to believe that spring isn't so far away (even if we still have to face the commercial nightmare that's Christmas😆). Sending you a hug.

Spanky2019 profile image
Spanky2019 in reply toPortobello

Yes, I don't remember a year with s few sunny days, just rain, rain. Now we have6 months of winter ahead of us. Certainly a contributing factor. Thank youand hope youhave a good day.

Devoid profile image
Devoid

Hi I have been ill since April also, still not showing much improvement but starting different treatment soon. I could cry at anything and everything for the first few months, then it just started to be less frequent, do let yourself cry and grieve what’s changed in your life, a big turning point for me was when someone asked me if I was scared, no one really close had used that word , yet it really summed up what I felt. Since then I have accepted the situation and all that comes with it much better.

Spanky2019 profile image
Spanky2019 in reply toDevoid

Thank you. Have to think about underlying feelings. Suppose " scared" could possibly one of those feelings I would be reluctant to admit??? I'm a very small person & always have tried to portray strong image as one of my major characteristics. Hope your day is good.

Jackoh profile image
Jackoh

Just reading your history and you have been through so many things in such a short time, many “ bereavements “if you like. You have also tapered very quickly and I do think that sometimes tapering can give us a low mood. I suppose it’s how deep is the low mood and if it has been continuing for sometime and also feels very dark. Then I think that’s the time we have to take it further by visiting a GP and asking for help. That doesn’t make us a weak person- it takes strength to do anything proactive when we feel this way and the easiest thing would be to try to sweep it under the carpet. Unfortunately it seems more acceptable to seek help when we have a broken leg or something that folks understand or we deem “ acceptable” Depression is just as real and can physically hurt. I’ve had to seek help in the past and I’m sure that many others have too. Do go and see your GP and explain how you feel , take someone else with you if you feel you need support, and let us know how you get on.

Darcy2000 profile image
Darcy2000

Not sure if the sadness is connected to the tapering regimen...my Rheumy firmly believes in 1 mg taper per month .. and not more than that ... slow but steady wins the race and may help with the feelings of depression

Not what you're looking for?

You may also like...

New GCA diagnosis & overwhelmed

Official diagnosis of gca 1 week ago. Tab negative, but sed & crp extremely high. Given injection...
Spanky2019 profile image

Actemra injections. USA

I'm going to start these injections for PMR/GCA. I have been on prednisone for six years; have had...
EmmaLaura profile image

GCA, now mononucleosis, bump in prednisone

Diagnosed with GCA & PMR 3 years ago. Have tapered down to a 1.5 mg prednisone dose....
Lucy2013 profile image

Scalp pain advice

You know my story-gca since April 2019. Tapering prednisone- been on 15 mg almost 30 days....
Spanky2019 profile image

Surgery successfully next step actemra

BCC surgery successfully completed. Dr says if no sign of infection in incision, in 1 more week I...
Spanky2019 profile image