Feeling low on steriods

[Zellamze]

Hi! Back on 15mg after a flare up. Been eating more and feel really upset and low. I don't know if I'm now depressed? I don't want to upset you all but I feel knumb and sad. Sometimes even wanting to end things.... 😢 Could this be the Steriods? I should talk to the doctor but don't want to go on more medication. I feel so low and upset.

[DorsetLady PMRGCAuk volunteer]

Hi Zellamze,

Sorry to hear you're feeling so low at the moment. Guess it's a combination of physically having to increase your Pred to get your flare under control, and psychologically having to accept things weren't improving at your previous dose.

If you think you at becoming depressed then the only thing is to speak to your doctor, I appreciate you don't want more drugs thrown in at the moment, but maybe there is some other help you could get.

Is there a support group near you, perhaps if you could just speak to someone you may feel better.

All I can do is send a virtual hug - sure others will as well. Best we can do, but it may help a little.

Take care.

[Zellamze in reply to DorsetLady]

Thank yog, maybe I'm just having a really bad day. 🐝

[Sheilamac in reply to Zellamze]

I have them too Zellamze! I think it's the illness itself dragging you down, then the steroids and the depressing nature of the side effects. Having to put your dose back up! But maybe you won't have to be at 15mg for so long this time. I have also thought that life wasnt worth living anymore but it has always passed. I love the way Doralouise described it 'it's the Prednisolone talking' ! I think understanding that helps. My daughter helps me put everything back into perspective. She totally understands me and what is happening to me and never does the pull yourself together thing! If you don't have such a person then maybe you can find a Support Group near you. I understand your reluctance to go to your GP but maybe even just talking to her/him will help.

I have to remind myself regularly that there so many much worse conditions I could have developed, many with no cure. This infuriating PMR will pass and one day the steroids will be over!

I hope it has helped you to talk to all of us and that you will keep messaging us and let us know how you are.

[Zellamze in reply to Sheilamac]

Thanks ❤️🐝

[Lafontainepam1 in reply to Zellamze]

💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕

[Doralouise77]

I just had to answer this quickly before going out as I experienced what you are now. The first time I was on Prednisone about 6-7 years ago I had those thoughts of wanting to end things. Nobody told me that it was the Prednisone talking. The thoughts were constant even though I didn't feel depressed really. So this time around when I got those thoughts I knew what it was and could deal with it. The psychological side effects of Prednisone can be as real as the physical ones for some people. This was just my experience, but if you are feeling depressed and sad please talk to your doctor about it. Some people need an antidepressant to help. Worry about upsetting us? That's what the group is for! a place where you can talk about your feelings to people who understand and do not judge. I wish I had known about it when I was having those problems.

Keep posting and let us know how you are doing. I think you will find you are certainly not alone with your feelings. xxx

Cheers

[Zellamze in reply to Doralouise77]

Thank you. ❤️

[Zellamze in reply to Doralouise77]

Thanks. ❤️🐝

[PMRpro Ambassador]

It could be either the PMR or the pred - or the disappointment of having the flare. It is easy to feel good while you are getting down to a lower dose - but when it goes pear-shaped its horrible. And the time of year doesn't help.

But if you feel that down, you really do need to speak to the doctor about help. It doesn't HAVE to be more pills because talking therapies have been shown to be just as good - but the problem is accessing them quickly with long waiting lists so possibly a bit of chemical help in the meantime might help until you can get the support you need.

As DL asks - is there a support group near you? If so, maybe the organiser could put you in touch with someone else so you can chat about the joys of PMR.

PMR may not be particularly serious nor life-threatening, but it is certainly life changing. That in itself is a problem - it is effectively a bereavement, you have lost your normal lifestyle and you have no idea how long that is going to last. It's hard, we all know that but that doesn't help you here and now.

Please go to the doctor soon but in the meantime, feel a few more virtual hugs.

[Zellamze in reply to PMRpro]

Thank you. 🐝❤️

[PMRpro Ambassador]

I'm back - rather quickly!

I've just read some of your past posts - maybe you should too and perhaps see the pattern I'm seeing. I would suspect one of two things.

Either you are reducing too fast and you have now got into a yoyo pattern which is possibly what is causing the problem. In that case, I think you need to slow right down. Try 1/2mg at a time and get your bloods done at least every month, preferably every 3 weeks - and stop reducing as soon as you see it start to climb and go back to the last dose. It isn't slow if it works!

The other possibility is that this isn't PMR but the PMR symptoms were the herald of something else. One in six people with an initial diagnosis of PMR has that diagnosis changed later. Late onset RA can present identically as can a few other forms of arthritis and they will respond to pred initially but then you struggle to reduce.

You have said in your other posts that this time it is predominantly right-sided - is that right? If so, that makes me more suspicious this isn't PMR, or that it is superimposed on PMR. Did you do anything before the right-sided pain started?

[Zellamze in reply to PMRpro]

Thank you, I'm trying to think. ❤️🐝

[Zellamze]

I've had all the tests for RA and they came back fine. My nan did suffer from RA though. I've also had X-rays as well and ultra sound scans and they were fine. I don't think I've done anything to hurt myself? My hips always hurt for some reason. I feel like stopping the Steriods to see what happens regarding the pain? I'm still not convinced I have this. I know that would be silly but how many days can you go without taking them before you get ill?

[PMRpro Ambassador in reply to Zellamze]

After this amount of time you are risking it after a couple of days - you need to to taper.

Who did the tests for RA? Ther eis no definitive test - just like for PMR. You can have RA and be seronegative. LORA doesn't always show joint erosion from the start and there are other forms that are similar in that sense.

Has your doctor considered you may have trochanteric bursitis? That makes hips awfully painful, especially walking and going up stairs. Oral pred really doesn't cut the mustard there - injections are far better.

Have you seen a rheumy?

[Zellamze in reply to PMRpro]

What's that? RA? Rheumatoid Aurthritis do you mean? Yes I saw a rheumy three times. Also what's trochanteric bursitis?

[Zellamze in reply to Zellamze]

Just looked it up and don't have that. 🐝

[PMRpro Ambassador]

patient.info/health/greater...

my.clevelandclinic.org/heal...

The Cleveland mentions poor posture as a cause - and you almost always have that with PMR, we do walk "funny"! It is very common.

RA - yes rheumatoid arthritis but the later onset version is a bit different

[paddyfields in reply to PMRpro]

I am reducing very very slowly and am down to 3/2½ mg and as a result of PMRO's post, I have just realised I am not waddling anymore. Hurray!!! Now for the squirrel nutkin cheeks and the buffalo hump not to mention the enormous tum which is a family trait which up to PMR/pred I had managed to keep at bay.

[Zellamze in reply to paddyfields]

I'm so happy for you. Well done. How long has it taken you to do this? How long have you had PMR. 🐝

[paddyfields in reply to Zellamze]

I am afraid I am not typical if anyone is. and my rheumy with reluctance has conceded "an element" of PMR contributing to my recurrent "multifactorial" hip problems - defo not arthritis but muscular sometimes escalating to a debilitating spasm at last diagnosed by private physio as piriformis syndrome which I suspected for years. Why am I not more assertive?. So don't think my case is of much help to you. I am in the process of looking back through my copious notes to untangle some of this.

I also have Parkinsons which causes muscle stiffness and random aches and pains so it is hard to tease out what is down to what but I am pretty certain I had PMR in the year before I first attended Rheumatology in January 2013 having felt really ill/fluey all over with mainly hip girdle and leg aches and pains having been on steroids from the GP for recurrent trochanteric bursitis and sciatica for couple of years and where I simply could not get below 8/9 mg without the feeling ill again - with hindsight due to rapid reductions. Now that the hips are 99% better but thighs still weak I realise that my shoulders are not too hot either.

As PMR pro has pointed out conditions can mimic others and all you can wish for is that your rheumy is open minded and investigates what is going on thoroughly which I cannot fault my rheumy for even if it does take for ever on the NHS.

I could go on - indeed I think I have.

Best wishes and remember that you are entitled to a second opinion and specialists are quite used to this.

[Zellamze in reply to paddyfields]

Than you and sorry to here your new. Big hug. 🐝

[Zellamze in reply to PMRpro]

I don't understand this walk? I don't seem to have this? Sometimes I feel I've been misdiagnosed ? I only have some of the PRM symptoms? 🐝

[PMRpro Ambassador in reply to Zellamze]

Not everybody has all the symptoms (thank goodness!). But unmanaged PMR does have a VERY typical walk because of the hip stiffness that is actually fairly much a criterion. In fairness, some people don't have it but they are few and far between and often not diagnosed for a long time.

But I have suggested before that maybe this isn't PMR, or not all PMR - and I really think you need to discuss this carefully with your doctor.

[Zellamze in reply to PMRpro]

Thanks. I think I will. I have a double appointment next week as I've recently had more blood tests and I like to talk through them. I know that I feel exhausted and in pain with my inner hips and right arm and shoulders, neck and can't do as much as I use to. Walking long periods are now cut to max one hour then I feel I need a rest. Something is going on. I've been under loads of stress over the last four years with my mum passing, gran and two grandparents. so I have had a lot going on, but that's life and we all have to go through death. But I will ask my doctor again if it could be something els. Thank you. ❤️🐝

[Zellamze]

Ok. 🐝 I'm only 51 years old.

[annie_marie]

So sorry to hear you are feeling so low.

You have friends here on this wonderful and supportive forum. I'm sure no one will feel you have upset them by being honest on how you are feeling. A trouble shared and all that.

Take care and be kind to yourself.

Hugs. X

[trish29]

Hi Zellamanze ..i am sending you loads of Virtual Hugs as I have just been down this road again absolutely hating myself and the fact that yet more problems have made me go up on the Steroids and already that weight is going back on .PMRpro and Celtic and Dove Lady and so many others on this Forum can make you feel better with their advice .i went to a Support Meeting this week and spoke to other sufferers. I came away from this meeting still hating the condition but I knew I was not Alone..it is so frustrating but stay strong and keep posting when you feel low .Best wishes trish29

[Zellamze in reply to trish29]

❤️🐝

[enen]

When I previously had GCA my Rheumatologist also diagnosed depression. She added Amitriptyline to my mix. I at the time did not agree and I did not like her but I must admit the amitriptyline which is an antidepressant helped me sleep and lifted my mood. I eventually stopped taking it but it did help during that period. Let your Dr know how your feeling. XXX

[Marion63]

Zellamze, I'm sending you a hug... May you feel brighter soon. x

[Brantuk]

Have a hug from me too! I also had a small bout of depression and feeling low which was most unusual for me - but it was when I was on higher doses of pred over 25mg daily - and there was no other explanation for my mood than the pills.

Knowing that it was an external influence helped me to get through feeling down and sure enough it eventually went away. So hang tough, remember it's a side effect of tapering, and try to see it as part of your treatment for getting better in the end.

Don't hesitate to talk with your partner, family, or doctor if it gets hard to cope.

[Zellamze in reply to Brantuk]

Thank you. 🐝

[Jackoh]

Sorry to hear Zellamze that you are going through such a hard time with many emotions and feelings rising to the surface. Just wanted you to know that we are here for you. As has been suggested do try to find a support group so you have someone to talk to so you won't feel so isolated. If you still continue to feel down do go and discuss this with your GP. Sending you lots of love and do keep us posted to see how you're getting on; don't just try and go this alone.

Jackie x

[Zellamze in reply to Jackoh]

Thank you. 🐝

[isabella2015 in reply to Zellamze]

Zellamze. - oh yes! It can be very depressing. What has effected me is not being able to do the things I used to. And not even wanting to at time because of feeling too tired and no real purpose in life. On the other hand I feel very lucky with where I am. But I do seem to have less stretches of loneliness and stress and am laughing more again, so that feels hopeful. It really helps me when I see friends or talk on the phone to them. I was going to get counselling but as I am feeling so much better I have put it on one side for the time being. But I'm very enthusiastic on "talk therapy!! Take good care of yourself, spoile yourself. You might as well seeing we are stuck with ourselves!!! THankyou for sharing how you are feeling. Hugsxx

[Zellamze in reply to isabella2015]

Thank you, I'm much better today. ❤️🐝

[11caroline29]

Hi Zellamze. I am also 51 with PMR and GCA. I have had several periods of depression since diagnosis and contacted Lifeline and received telephone counselling which did help me. I didn't want to take anymore medications as have enough with steroids and diabetes and fibromyalgia. I didn't need a referral just lift the phone to them when you are feeling low. It is so much easier talking by telephone. Please give it a try. Also making contact with other people at a PMRGCA support group will help you feel less alone. Best Wishes.

[Zellamze in reply to 11caroline29]

Gosh! I'm so sorry for you. It must be very difficult for you to cope with all those illnesses. Thank you for your kind words and sending you my best wishes too. Be strong. ❤️🐝