Hello to all. I haven't been on this site for awhile due to some horrific side effects of preds. I would like to ask you all some questions if you don't mind. I I thought for awhile I had gotten some relief from the shakes the dizziness and anxirty. The feelings I can t breathe and just some wierd things. As I post this I am shaling
so badly and feel as if I could scream or just run or just die. For a little while most of it subsided now it came back with a vengeance. Is this normal??? When I stand I feel as if I will faint. Monday is my day for tapering down. I hope this calms somewhat but afraid it will not. I am sorry If I sound weak but right now I am in one panic mode but I stay that way even in my sleep. Please if you could help me. Thanks in advance,
Hello Phyllis, oh dear you really sound as if you're having a very bad time of things. Luckily for me all of what you describe has never happened to me yet. May I ask what dose you are currently on and what dose you propose to reduce to.
i would suggest if others cannot offer any help you go back to your GP and see if they can offer any help.
i do hope things improve for you very soon. Regards, christina
Hi Phyllis, I think these side effects come and go, the same ones I mean! I thought I'd got rid of the shakes, but even being down to 12.5mg of pred they've returned!! Plus an intermittent nervous feeling inside has returned too! Damn steroids! Xx 😢😣
I am on 20 mgs. reducing Monday to 171/2 mgs. I ask if tyhat wasnt a big leap they assured me it was not. My GP could care less. I am new to this town and can't find a doctor with a good bed side manner.
andrea. Thanks you and christina for your post. I am sorry these go on and off like this. I am so afraid right now I coud jump out of my skin.!!!!I have that nervous feelinf shaking inside awful thoughts and depression to top all the other things. i was so worried about weight gain HA! that minor to this crap!!! I am not a human to be around right now. tomorrow is My husabnd and my Ist year Anniversary of marriage and i don't want to even celerbrate I just want to crawl in a hole and stay there. God please help me. I am sorry these are demon drugs. Just the way I feel . So glad they are helping others though.
Severe hand tremor, even arm tremor when holding any weight. Stomach protruding without hardly any weight gain. Large red spots coming and fading all the time. Forgetting well known words. Change in walking gate. Afternoon fatigue. Irritability. Pains in buttocks after short walk. Pain in hips like an ortho problem but xray evidence. What have I forgotten. Its hard to sort them all when you are advanced in age.
Apparent PMR Jan 2014. Diagnosed May 2014.
Pred 1st day 60. 2nd day 20. 4th day 15. With a stupid up dose back to 15 last fall that I did to myself, I'm now down to 11 and hoping for some side effect relief but I don't think I'll see it. Still playing 8 hours of tennis a week and living with the after effects. How can I complain?
If any of this gives a better idea of what to expect it will have been worth while.
Phyllis I to have problems with side effects going on them was bad light headed anxietysleep problems just feeling out of it,my real problem came when I started reduction.I was on only 10 mg.Reducing from higher doses usually causes no problem.I am down to 9 mg it took almost 2 weeks to adjust It takes time for your body to adjust to even the slightest changes ,at least for me, just be patient it will get better.So you see you are not alone hang in there hugs Carol
Hi Phyllis
Are your meds helping control your original symptoms?
Side effects can be really worrying - you sound as if you are one of the really unlucky ones that is going through the whole register - poor you.
I recognise the strange anxiety feelings or a sort of fidgety feeling inside - unpleasant but in my case a seldom visitor thank heavens. I had a depression at the onset of my GCA - was being treated for it before GCA was diagnosed. After about a year I stopped taking anti-depressants and have been OK since then.
It is a godsend that this forum is around so you can unload when you are feeling miserable.
I really hope that you feel brighter soon - I will think of you on Monday - hopefully I too will be able to taper down a little on monday.
Stay strong Phyllis.
Hi Phyllis, when I was first diagosed with PMR I was put on 20mg. Pred. (2 years later now down to 4.5mg.). I clearly remember having 'the shakes'- esp. in the first few hours after taking the dose but not as extreme a reaction as you describe. I also recall feeling 'wired' and hyper and talking non-stop . . . And the nightime sweats and feeling anxous about everything. All ceased as the Pred. dose reduced slowly. So there is hope! However I would talk to your pharmacist about all this. I find they know much more than the docs. (predictably enough) about medications . . If he/she thinks you should get back to the doc. then do this. Could you be taking another med. that can cause problems with the Pred. you're taking? Tell the phaarmacist ALL the pills, even over-the-counter herbal things. You never know, they could be relevant. Or, it could simply be that you are more sensitive to meds. than others. . . Keep in touch, J
Hi Phyllis. Poor you, to be celebrating yout 1st anniversary like this. I also have the pred side effect of anxiety which causes trembling and shaking. It varies in intensity, sometimes quite mild, sometimes strong and very difficult to live with.. Also the dizziness, restlessness and agitation which come and go. I' m afraid I dont have any help to give you, but I do have an idea of what you are going through and hope that it gets better for you as you reduce the preds. Keep strong and good luck.
Phyllis, I understand completely your feelings of dread. It was months, no maybe a year before I really came to terms with this condition. I too suffered many morbid thoughts and constantly cried worrying if I was going to live. On some occasions I was scared to go to sleep in case I didn't wake up. I had these thoughts even though I knew you don't die from PMR and I knew my feelings were totally illogical. Was it the PMR or the preds, or was my depression initiating my morbid thoughts? I don't know. But one day I woke up one morning and I was simply just so fed up of living in fear, and simply so tired of thinking about my death at the expense of not really living. From that day to this I am back to my normal self and I just get on with my life. I hope you experience this "moment " too because I know just how destructive being scared, anxious and depressed can be. All the best Phyllis, regards, christina
Please, please stay with at least reading the forum. Preds can bring on depression. For example I cry almost all the time BUT I know it's the meds. I also know that this can last for years since I am on 30 mgs. We are all here for you but do not be afraid to get help for your thoughts. I take a little pill at night to help me sleep and to calm me down. Keep in touch, Ann 11195
Some people have found that splitting the dose helps with some of these sorts of side effects. Obviously taking it at night isn't going to help if you say it is still there in your sleep.
The usual starting dose for PMR in the UK is 15mg so the drop to 17.5mg shouldn't pose a problem in that sense - but you may find you have a few problems just because of the change of dose. If anything starts immediately after taking the first lower dose it may be that so stick it out and if it improves over the week that's fine.
I do appreciate the way you feel - but do try to calm down because it becomes a vicious circle - you are panicking and anything you feel makes you even more anxious. It is understandable but doesn't help.
Do try to find a more empathetic doctor - because that is very important when you have a chronic illness. If your GP isn't helpful - ask for a referral to a rheumatologist. I'm assuming you are in the US? Am I right? Would he refer you to any other specialist? There are medications that would help the anxiety but it doesn't sound as if he is listening to you. Have you taken your husband with you to an appointment? It often concentrates the mind of a GP who is mentally classifying you as a hysterical middle-aged menopausal woman - without any justification. It happens a lot though.
Have I given you this link before?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Both you and your husband will find lots of info through the links in the first post so that you are at least better informed - and knowledge is power.
In the replies of that link there is a description of a slow reduction - some of you others will find it useful too. Or, if you struggle with the drop to 17.5mg, try alternating the old and new dose for a few days before going to 17.5mg every day. The reduction plan becomes even more useful as you get to lower doses.
It will improve as the dose goes down - and in the meantime you have to get your head around the fact that pred isn't a "devil drug" - you DO have a choice, you can stop taking it and deal with the PMR symptoms so you really do have to decide which is worse. But do also bear in mind that the uncontrolled inflammation which is there without pred is also doing damage and increasing your long term risks of other illnesses.
Hi Phyllis again,,, I remember when I tapered from a higher dose my mental state was dreadful! my husband was afraid to leave me on my own at one point!! I brokerage vacuum cleaner in temper for no apparent reason only I wanted to hurt something or someone!! Everyone in the house ran for the hills as they thought it was them next! 😳😳 I can laugh at it now but those feelings were real at the time, it was dreadful! But as I reaper at lower diesel my side effects are just a muscle pain and nothing regarding my mental state. Hope that helps you a bit more,,me we are all in the same boat in this forum. With best wishes Andrea xx
Sorry my typing is awful tonight! Taper not reaper and where did diesel come from I never know it should read dose!!!
No Juno. No meds. different Nothing the doctors shouldn't be aware of. i will talk to pHamicist. thanks so much.
Ann I too take a anxiety pill and do ok while its in my system but the morning thing before I take it is terrible.
Thank you Eileen. I took my husband to the rhuemy with me she explained nothing except weight gain I knew that, i just didn't know about how awful emotionally they could make you feel. He got nothing from her (Rhuemy) He tries to understand but I feel I bring everyone around me down and that is not what i want. This is my illness. No I can't stop taking I understand the concquences. I will taper and do as u suggest with the 20 mg to 171/2 the next but first just try the drop to 171/2. I really need you guys. I don't feel better but it helps to know someone understands. Oh I sound very much likea pity party...well I quess I am. Just a low point right now, needed you guys to lift me up
Andrea How long have you been taking and what mg. are you on now. I hear they cause not so good blood work when you have your CMP done.