I’ve become a crazy person!

[vnett]

Is the anxiety, jittery nerves, depression , brain fog and inability to focus on anything for long from the PMR or the tapering off prednisone? I’m at 7 mg going slowly(very slowly)down to 6 and I have become a different and very scary person rather suddenly. I actually cried at my rheumatologist appointment today and that never happens. My doctor noted that I have been super sensitive to prednisone and it’s side effects all along........but this now that I’m actually getting it down and hopeful that the side effects will be diminished. I’m seeing camels and straws right now! Words from the wise, please!!

[SheffieldJane]

Gosh vnett, yes it can feel really odd at times. Do you take any other meds like Tramadol or anything that could have caused hallucinations? Pred and alcohol doesn’t work for me, but it does for others. I guess it’s the only culprit then? Are you able to drink milk? I find that it has a soothing effect and perhaps a couple of paracetamol. Put the lamp on and perhaps read something for a bit. I am assuming that you are in the UK and it’s about 2 am? I have just woken myself with a nightmare, a new treat for me on 5.5 mgs of Pred. Treat yourself the way you would comfort a child. You are never alone on here.

[Sandy1947 in reply to SheffieldJane]

You are always sooooo comforting!

[Hidden]

Hi vnett

How very unsettling, did you mention this to your Rheumatologist & has it only just come on? Have you considered just dropping by 0.5mg? How were you on higher doses?

As Jane asked are you on any other Meds, like Jane says Tramadol springs to mind? If it’s the same in the morning you need professional input, are you alone or do you live with someone as you must be very scared.

MrsN x

[vnett in reply to Hidden]

This has been coming on for a few days now. Talked with my rheumatologist and she feels it’s my hyper sensitivity to the meds and possibly adrenal issues. She did lots of blood tests and imaging. She offered a script for anxiety meds but I don’t need to feel even foggier than I am now. I’m afraid I had every adverse side effect on higher doses of prednisone so I’m surprised by these new symptoms on lesser dose. I am going to slow the tapering even more now and wait for tests results. I fortunately have a wonderfully supportive husband and the support of this wonderful group! Thanks MrsNails!

[vnett]

So sorry about the nightmare but thanks for the late night hand holding! Other than methotrexate, my other meds are pretty normal. Blood pressure, acid reflux, cholesterol and vitamins. I don’t drink......though it’s tempting lately. I love to read but can’t focus so I read and reread plus my eyesight has worsened. I’m simply not me anymore and though there were things I would have changed about me these are not those changes. I’m in Chicago, so my 2:00 am insomnia time awaits me. I like the sound of the warm milk and maybe a calorie laden cookie. I’ll hope for a calmer day tomorrow and that you can go back to sleep and have happy dreams. Thank you for keeping me company and not alone in this.

[Neverending63]

Never alone here always someone having trouble sleeping lol. Personally I would just take the reduction even slower and see how you go. We are always here if you just need a chat x

[vnett]

Thank you so much!

[Soraya_PMR]

A stab in the dark.... Is there any chance you have an infection? Wee infection?

[SnazzyD]

I’d put money on it being the 7 Effect. I was a gibbering wreck all of a sudden. The crying got a bit tiresome. I believe it was because 7mg for most is not enough to satisfy all your body’s needs all day long but too much for the adrenals to have got the message to work themselves. With that theory I pushed on through slowly and by 5mg it was much improved. Once at 3mg it had completely gone. I’ve been super sensitive to Pred too and looked forward to the golden days, as promised, of low doses and an easier life. It was a great disappointment when it wasn’t the case until much lower and I lost last summer to a weak wobbly emotional blur.

[vnett in reply to SnazzyD]

Knowing that actually makes me feel better. I may find relief soon though I’m tapering very very slowly. Add the coming of Spring to the mix and there’s hope for some emotional stability! Be well!

[ClarkB]

I think you’re not alone in feeling the way you do. From reading your first sentence your descriptions could apply to me, although the depression is rare. Anxiety and jittery nerves can suddenly appear, often at night. I put the light on and read or listen to something on my trusty IPad. I might also make a cup of decaf tea which helps. I can’t focus on anything for long, and have a pile of half started books which I would normally race through! It is scary and claustrophobic when the anxiety, almost panic feeling descends from nowhere, hence my trying to immediately switch off. If I feel anxious during the day I go out and try and switch off. As for the pain, I still go out walking even if it’s a struggle when I start out and find it actually gets easier. I’ve never been pain free on prednisone. I can only share an experience, rather than give advice!

[vnett in reply to ClarkB]

Thank you for sharing. It is the suddenness that takes me aback and I too often act before I attempt to get some control over it! My poor husband...... Since I can’t focus to read for very long, I’ve decided to try an audio book next and hope the soothing sounds will calm or at least distract. Hope you find pain free days in your future!

[ClarkB in reply to vnett]

I think audio books are a good idea. I always suffered from insomnia anyway and found them a great help. I often fall asleep whilst listening. With Polymyalgia it’s different, as like others I can fall asleep but wake up around 2.00 or stay awake until 2.00 or 3.00am and sleep until 6.00am. As I mentioned before, it is the waking in the night with the feeling of panic or anxiety. I have to act immediately, by focusing on something else or getting up.

As I have osteoporosis I never know what is causing what on the pain front. I am down to 2.5 mg Pred, but had pain all along at higher doses too. I’ll be interested to see what happens the lower I get! Haven’t had contact with Rheumatologist since last summer by email. Not monitored as such by the various doctors at my practice, and get all my advice from the knowledgeable people on this site! I don’t know anyone personally who suffers from this, and there are no local groups. My friends are intrigued as they had never heard of PMR or GCA!

I wish you too to have pain free days in the future. All our experiences are different, and there are some light at the end of the tunnel stories here!

[vnett in reply to ClarkB]

I certainly relate to all you’ve mentioned. Good hunting for that “light”!

[SheffieldJane in reply to vnett]

No thrillers, murders, or horror. Sweet audio books only vnett. 😊

[PMRpro Ambassador]

Can be either - I had all that with untreated PMR and for me they improved once I was on pred though the short fuse remained! Not quite as short though. Many people experience them with pred and some of them return as the pred dose is reduced and adrenal function isn't quite up to it.

I'm assuming it is straws breaking camels' backs you mean? Not hallucinations?

[vnett in reply to PMRpro]

Yes to that camel’s back! I feel I’m down to one straw these days!

[Grants148]

I understand how you feel,l have been on quite an emotional rollercoaster myself while taking pred,and plenty of brain fog too.l do feel much calmer now on 5 mg of pred,l think it is when we reduce our dose that it can unsettle things untill that new dose sets in,that is how reducing has affected me.l hope you feel better soon .

[Xanthe12345]

Just would like to say that I have had poly since early 2016. This time last year I was recovering from bronchitis having had two courses of clarithymicin antibiotics ...I had my first ever panic attack with anxiety and depression. I had at that time reduced my pred to 7mg. I can honestly say it was awful. Lost 2 stone as I couldn’t eat. Doctors finally prescribed Mirtzapine which I was so reluctant to take. It worked wonders (except for tiredness in the mornings). Now a year later I am reducing pred to 4.5 after staying at 5mgs for 4 months. I am on 7.5mg mirtzapine and feeling nearly normal. Please get help if you think you need it. I have managed pmr virtually on my own. I researched and discovered that clarithmycin is one of the antibiotics not compatible with pred. Not sure if it was that caused my anxiety etc or the dreaded adrenal glands.

When I was at my lowest my friends on here was so supportive as was my family. You will get better but get help if you need it! Sorry bit long winded🙈

[vnett in reply to Xanthe12345]

Thank you for more good info. I recently refused certain antibiotics for fear of interactions with the prednisone. I will seek more help if this continues. Be well!

[bunnymom]

I have intermittent anxiety now at 7.5

I have found just taking half a tablet of anxiety meds a couple of times a week to be enough to help. Taking one full tablet everyday made me tired. Who needs that! It's not how it was prescribed but Dr was ok with my plan. Some weeks I don't even need it.

[AnnS]

I am suffering the same effects... and more. I've been very slowly tapering from 50mg and have now reached 10mg but feel horrible with the 'brain fog' stopping me from doing anything useful. Like you, I suffered horrendous side-effects from the steroids and my doctor was worried it was dangerous for me and he thought I would feel better as the dose reduced. I don't! Now I have a lot of new symptoms that are just downright scary and am also suffering from high anxiety and depression but refuse to add any more medication to the mix.

[vnett in reply to AnnS]

Oh I feel for you. We seem to be in the same place. I can only hope that this passes as quickly as it began. At least we can share our fears here with so many caring people who truly understand us!

[AnnS in reply to vnett]

Yes, this wonderful forum is a great source of comfort. I haven't contributed much lately because I'm still not officially diagnosed. Having been horribly ill and pretty much housebound for 18 months, even the best brains in the business haven't managed to establish what's wrong with me. PMR/GCA are still possibilities but they also suspect some kind of myositis and other autoimmune diseases so I have joined several support forums and hover between them. I find the information invaluable, particularly regarding the heavy-duty drugs we all take. There's safety in numbers. Hope you feel better soon.

[karools16]

Sorry you feel like this. Last year, I tried to taper from 7mg Pred to 6.5. I was fine for 3 weeks, and then the symptoms you describe appeared. Crying for no reason, feeling down. I went back up to 7mg and am still there.Someone, on this forum, suggested it might be my adrenals.I do hope it soon passes.

[YuliK in reply to karools16]

I have managed to reduce to 7mg, but I do feel a few pains in my arms and shoulders. After a cuppa and shifting around the house, the pains disappear.

I'm no spring chicken, so I can expect a few pains here and there. I'm still reluctant to go down the 0:5mg ( half a mg) so I'm waiting another two weeks.

I forgot my Visa card in the supermarket yesterday and for the life of me I couldn't remember where was the last place I used it.

This has never happened to me before and I put it down to Prednisone... ( probably old age too 😀)

I have a permanent red face all the time, and this is also since the prednisone.

I live alone, after my husband died, and lately have felt a little down, but again it could be the prednisone.

Other than that I am happy with my progress

on reducing the prednisone...

YuliK. 76

Started. 25mg

Today 7mg. 👍

[vnett in reply to YuliK]

Your positive take on this is very inspirational!

[Daisychain12]

I think you are incredibly brave. It’s horrible to feel all that. Well done on keeping going. Xxxxx

[Sandy1947]

I understand how you feel. I have had PMR for 20 months. Down to 1/2 mg Pred., have severe osteoporosis and Rheumatlogist wants me off Pred yesterday! I’m up at 4 am for the day and in pj’s at 4:30 pm. Not a good look for dating! I have increased anxiety with illness and Pred. Have tried Tai Chi/Quigong, Tumeric, no alcohol, anti inflammation diet, retirement, new friends, book club, etc. My patience is short, wasn’t great pre diagnosis and attention span rivals my 4 yr. old grandson and 2 yr. old granddaughter. Sometimes my emotions are close to the surface. Now I find volunteer work with my charity, hugging puppies, massage and Zumba to be helpful.

[vnett in reply to Sandy1947]

I may have tried everything but the puppy 😂😂😂

[nuigini]

Mood swings, brain fog, and inability to concentrate on anything for long have been with me off and on over the five years on prednisone, no matter what the dose I'm on. Although I do think the low moods tend to occur more with each reduction, as does the teariness. I actually gave up driving for a while because of my inability for focus/concentrate. Some days I just wake up in a bad mood. On those days I always warn my husband and tell him I'll try and not take it out on him. 😜🤪

[vnett]

My poor husband tiptoes around me till he senses the current mood😂😂

[Dream21]

Gosh...the disease and medicine does affect our emotional health.

Especially, when I lowered from 10 mg to 3mg. Those last 10mg are tough to wean off of. I stayed on the couch for 2 months...dizzy, extremely exhausted, depressed, and anxious at times. It is the toughest tapering. Hang in there. Maybe your doctor can prescribe something to help you.

[vnett]

I’m hanging in there by my finger tips.....but appreciate the many hands here holding me up there. My doctor offered more meds and I refused for now. I’ll consider something mild if this becomes worse. I’m hoping Spring will help and am willing to try more attempts at mediation, massage and music therapy. I will use my stubbornness as well. Be well!!

[Dream21 in reply to vnett]

Good for you.

[arthur463]

I haven't read all of the many replies you have - I just want to refer to the camels.

No worries there.. When I was in the depths of high Pred intake, I saw little black monkeys dressed in red short and dancing together in a tree.. A whole street of ancient Greeks talking together -- and a daily visit by a beautiful butterfly with a two foot wingspan.

Now that I am on 3.5 mg, they no longer visit me.. I am so relieved, but slightly saddened too. Are they nice friendly camels?

Arthur