Steroids and hallucinations

[Morant]

Hi everyone, I was diagnosed with PMR at the end of 2018 and put on 25mg of Prednisilone. Within 6 weeks I had fallen (from standing) and broke my hip, arm and shoulder. I also started to have hallucinations. Since then I have been on and off steroids. This year I was put on 45 mg in January as my ECR and CPR numbers were very high. My hallucinations have returned , although I am on a reducing dose, I wondered if anyone else is experiencing anything similar. Many thanks in advance.

[PMRpro Ambassador]

If your diagnosis is PMR - why on earth have they put you on such a high dose? There is no relationship between the level of the blood markers and the severity of the inflammatory process.

I'm not sure there is anyone here with those effects at present but we have had people who suffer the psychoactive problems with pred. One person was on methotrexate alone and seems to get some benefit. If there is any question of GCA - why does the rheumy not apply for approval for tocilizumab? It has been used successfully in such cases.

[Morant in reply to PMRpro]

I was put on 45mg as my GP thought I had GCA. I was seen by a consultant the same day. the same thing has happened twice e before, each time being seen by consultant but no GCA. My GP said as my ECR etc rates were so high and climbing he put me on 45mg as a protection. I am now down to 5mg, as once my GP realised I didn’t have GCA, he started the reducing programme. The hallucinations became a huge problem when I was in hospital in January through to March 2019. My hip operation failed and I needed another one . This happened in the same week. I wondered if all the medication I have been put on then is now having the effect of giving me hallucinations now.

[PMRpro Ambassador in reply to Morant]

How long was it before the GP started the reduction? Timing is all - if you haven't been at the high dose for long and if it isn't GCA then you can reduce down to 10mg very quickly - it might be a bit uncomfortable but it isn't dangerous. Different matter after 10mg if you have been on high dose pred for more than a month or so.

[Morant in reply to PMRpro]

I started the 45mg in January 2021 and am now at 5mg. I usually see my GP every two weeks when he suggests I lower the dosage. Previously I had been on a 25mg reducing dosage in 2020 and the same in 2018/19. Whenever I stop my inflammatory markers rise and I get severe headache with slight swelling at my right temple . My sight becomes blurry. I have glaucoma and blepheritis .

[PMRpro Ambassador in reply to Morant]

Then I think you really need to get the rheumy involved and ask about tocilizumab - you are relapsing repeatedly so that should qualify you for it, The GP probably isn't aware of the option.

[Morant in reply to PMRpro]

Thank you for the inform. I will see my GP about it first.

[nallufl24]

I did not have hallucinations but was severely depressed and so foggy that I could not read or concentrate on anything. I actually thought of ways to just die. I started to take an antidepressant. It took about 3 months for it to work. I think the pred was overpowering it. 5 months in now and the depression has lifted and I can think much more clearly. I’m a way off from what I am normally but at least I can function now.

[Nextoneplease]

Oh my goodness Morant, you have had a difficult time!

Have the medics explained why they’ve put you on 45mg? I think sometimes it helps to understand. Also, I assume you’re on calcium, Vit D and some bone treatment such as alendronic acid? Or if not, that you know why? Poor you, breaking those bones in a fall (I just broke my shoulder and that was bad enough).

I haven’t had hallucinations but on 40mg I did have nightmares and often woke very upset and crying for no known reason. And I did feel very low in mood. I was about to ask about antidepressants when the reduction in pred seemed to lighten my mood. And I’m generally okay now, six months later and on 12.5mg.

There is light at the end of the tunnel 😊 Keep in touch and take care of yourself xx

[SheffieldJane]

Oh you poor thing! Like everyone else I am puzzled by your high dose. What were your presenting symptoms? All manner of infections etc can raise the inflammatory levels. The start dose for PMR is usually around 20 mgs. I had a short period on 40 mgs and know how weird that felt. My doctor applied for and got Tocilizumab for GCA/LVV. I got down to 10 mgs within weeks and felt much more normal. Your broken bones are quite shocking. Have you had a bone density scan ( DEXA)? You must insist if not!

[Morant in reply to SheffieldJane]

Thank you for your message and information. Each time I have stopped the steroid reduction I have had high inflammatory markers plus severe headache and swelling at my right temple and blurry vision. Each time I go straight to see the consultant and each time it is not GCA. I take calci D and Alendroic Acid. I have had a bone density scan and I am borderline osteoporosis , osteopinna. I have also broken my ankles three times in three years .

[PMRpro Ambassador in reply to Morant]

Think you need to see a different consultant - on what grounds does he say it isn't GCA? Though to be fair, there are other causes of the symptoms but they have to look for them - it has to be something.

[Morant in reply to PMRpro]

I haven’t had a biopsy but a scan which showed a slight narrowing of the blood vessels but he said it was insignificant

[Nextoneplease in reply to Morant]

Were you on pred at the time? Lots of scans and biopsies show negative or inconclusive results - precisely because pred is doing its job!

[Sophiestree in reply to Morant]

I think, like PRRpro says, time for a second opinion. I believe if you ring the charity (PMRGCAUK) they may have suggestions as to who to see, your GP can refer you . I wouldn't be hanging around near them for too much longer, no one is seeing the bigger picture and you aren't being managed properly. Frustrating for you. Only a consultant can apply for Tocilizumab, but I think it would definitely be a starter.

[PMRpro Ambassador in reply to Sophiestree]

A PM to jinasc is probably more likely to bear fruit!! Don't think the charity likes to be seen to be partisan

[Sophiestree in reply to PMRpro]

ah ok, I thought I read on here before that if you rang them they have consultants they can suggest in certain areas.

[Nextoneplease]

It sounds as though your GP is doing his/her best but the consultant seems to have no curiosity!! And unless you’re into extreme sports (!) it seems someone should enquire further about your bone health….

Do you take vitamin K2? I learned on here that it can help calcium absorption but it isn’t usually prescribed…

[mloyuken]

After several months decreasing from 40 mg to 20 mg, I had several episodes of mind confusion where I thought I would lose focus. I forced myself to focus on one picture on the wall until my mind settled down.

[Suzita76]

When my GP put me on 60mg prednisolone (June 2017, when I had first shown acute symptoms of GCA), I had terrible hallucinations and severe psychosis such that my husband had to call out the Crisis team- I was completely off my head, not sleeping at all, sobbing uncontrollably, and trying to jump off tall buildings- totally not me!

(My consultant has since agreed with me that no one with a body weight of 50kg should be on 60mg. - maximum should be 1mg per kg weight).

I just cannot tolerate prednisolone (and after 2 years of hell) was finally prescribed Tocilizumab. I am still on Tocilizumab which has saved my life - I have been in remission (from large vessel arteritis/ GCA) since being on Toc. (proven by PET-CT scan in July this year, showing no longer any active artery attack).

Of course I live in terror of the Tocilizumab being stopped - the NHS has allowed it to be continued until March 2022 because of the pandemic. NICE were originally supposed to be re-considering (in 2021) extending Toc. for GCA patients beyond the year they first allowed but I haven’t heard if this has happened. I doubt it-any disease that predominantly affects older ladies is not top priority!

[Morant in reply to Suzita76]

Thank you so much for sharing your experiences.. I am so relieved to know that my hallucinations are probably steroid induced. I cannot wait to come off of steroids and hope that my PMR is in remission. Look after yourself.