Something is very wrong with me. I feel like I have some kind of dementia. I work from home (mostly phone, emails and internet, nothing physical), but I can't seem to manage it anymore. My career is falling apart. Tasks that have always been easy for me now make me want to scream, and I often do. I break down crying and run into the bedroom, then I scream into my pillow for 20 minutes until I am exhausted.
This was not happening before my recent flare. (I am back up to 20 mg now.)
Is this prednisone or the disease? I do not think it is actual dementia. I am only 53, and when I am not working I can think clearly. It's more like an inability to cope with any kind of challenge.
Can I or should I start another class of immune suppressants to reduce the amount of pred I take?
When and why should one consider doing that? Why isn't it standard with PMR? If steroids are so dangerous long term, why don't more of you take sparers? Is it because most of you are down below 10 mg? Is it because they cause other problems?
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sferios
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Higher dose pred can cause mental health problems and really if you are concerned about that you should seek medical help. Of course it is now the weekend!
Pred is the mainstay of management of PMR and GCA worldwide. In the USA there are two drugs that are being used, Actemra/tocilizumab is off-label as it isn't approved for PMR, just for GCA. and fairly recently Kevzara has been approved in the USA for use in PMR. They are both IL-6 inhibitors but work in different ways. These are not available in all countries. In the UK, there is no option - pred is used in PMR, sometimes with the addition of the two steroid sparers mentioned below. Most of the members here are in the UK as it is a UK based charity and forum. Relapsing GCA may entitle you to 1 year of Actemra - no more.
There are other so-called steroid sparers, primarily leflunomide and methotrexate, but whether they work to reduce the pred dose is a bit hit or miss. They work well for some, not at all for others and the adverse effects are sometimes considerable. But they don't really do anything for the PMR itself.
Most people are able to get their symptoms under control and then taper to a lower dose. GCA requires far higher doses: 40mg is just the starting dose. I have to say it - had you taken tapering more slowly as we suggested you probably wouldn't have had to go back to 20mg. There are good reasons for out advice.
You need to speak to your rheumy as soon as possible and ask what other options are available through your insurance.
PMRpro has given good advice, and please don’t think I’m belittling the situation you are in, I’m not… but if your symptoms were down to the Pred, I think you would have been worse at higher doses initially.
As we stated previously those feelings are more in common to your adrenal insufficiency, and although you have now increased your dose significantly - there may be some hangover from that and your very fast taper.
Agree with PMRpro that you need to seek medical advice, because you appear to be in a downward spiral - and that is difficult to dig yourself out without help.
What I'm feeling now at 20 mg is *very* different from what I felt before at 40, 30, and 25 mg. When this journey first started in January I had classic PMR symptoms. In May, after being on 25 mg, everything suddenly got better. That's when I did my three month taper down to 5 mg (mid-May through mid-July, too fast I know).
Now I'm back at 20 mg and it's really affecting me mentally and emotionally. The PMR symptoms are very mild, but fatigue, brain fog and inability to deal with work are terrible. I've never experienced anything like this, and I just sent a group message to all my closest friends asking for help. (I've never asked for help before.)
It's hopeful to think this is some kind of "hangover" from tapering too low, and that it will go away. Does that happen? If I could just start feeling again like I did in May, I would then taper really slow this time.
I do think whatever is going on has far more to do with either adrenal insufficiency or pred side effects than PMR. The PMR symptoms are just physical (right?). I know them. I understand them. They are mild. It's the mental/emotional stuff that I can't seem to shake.
It's the mental/emotional stuff that I can't seem to shake.
Unfortunately that can be a side effect of the Pred, many do suffer quite badly from depression.
But it is also a common affect that many seem to suffer when they are diagnosed with PMR… The symptoms are physical certainly, but accompanying that is a feeling of bereavement of their previous life including the lack of control, everything seemingly turned on its head, the impossibility of concentrating….etc…
You may find you do need professional advice as well as that from your friends.
Hi sferios I don't know if it is any consolation to know of other people in the same boat, and my position isn't as extreme as yours but I also have been feeling very negative, foggy and low-motivated, especially compared to my former/normal self. I have been on pred for 3 years now, working down from 15 which went pretty text book until April 2022 when I was down to 4mg and then got Covid which seemed to cause a flare and I increased back to 8mg. It has taken over a year to get down to 4mg again and I am holding steady as told I have adrenal insufficiency. Hopefully my adrenals will start up again - and I don't feel that it is only cortisol I am missing - but I feel uncharacteristically under threat all the time, a mild but constant background feeling and also that I can't be bothered with so many things that I used to take in my stride or feel was very important. I am hoping it will go!
It makes sense if you think about it. Cortisol is all about fear, fight and flight and giving us enough oomph to deal with things. I am trying to just be laid back about it feeling that I have done a lot so far so a break is bearable. I am still working but thankfully self-employed though I do have to push myself as some of that work is an ongoing commitment to twice-yearly publications x 2, both for arts marketing purposes. One I have been producing, publishing and distributing for 20 years, the other for 13. I am just having to plower my standards and let them be a little late, not as full, not distributed as well but at least they are out there. I hope that you can appreciate more what you are doing and less what you aren't doing? And, as I do, try and separate real and justifiable things to address from groundless worry - not always easy to do as you get older!
sferios For what it’s worth that horrible confusion/brain fog happened to me with Covid. One not so great symptom is I put things back in the wrong place. I had a 2nd very mild case at the end of May but now going through that again. Lasted about six months first time. I’m hoping to swing through it faster this time.
I didn’t have PMR but GCA from the age of 54. I learned a few things. One was that my body hated instability with Pred and slow tapering even from higher doses than 20mg was necessary. Big steps were hard physically and mentally. I can’t imagine what yo-yoing does. Another thing is not to underestimate the psychological impact of having one’s life upended suddenly and having something you love doing made difficult or impossible. I got counselling. Losing control of one’s body and mind is scary and it takes energy to keep going, especially if one has to keep up a front of business as usual. In addition you have have a wiffly waffly diagnosis that isn’t easy to grasp because really, the docs have no idea really what is going on but they know Pred stops it getting worse. The treatment that is Pred that one is told is dangerous and terrible and not a cure is also another blow to one’s mental health. It is vital but feels like the enemy and if one is not prepared or given tools to manage it, it feels even worse. It holds a magnifying glass to one’s fears and also make one less able to suppress them. It is important to try not to hurry the reducing and seek help for psychological upset, medicinal and/or talking. Learning to reframe your situation and let go of expectations really helps.
Wow! You really nailed it Snazzy. It's like you know me better than my friends. All this is exactly what I am feeling. I yo-yo'd and now I don't know if what I'm experiencing is just temporary from the yo-yo, or if I need a higher dose.
I know how you feel and steroid’s definitely affect my cognitive function. I’m working less now than when I could hardly move due to the PMR stiffness and pain
I have overwhelming sympathy for you. I got PMRGCA, both when I was 70 not, thank goodness in my 50s. I lost myself after starting Prednisilone. Although I had GCA I was not put on high doses but in spite of that I found organising my framing work weirdly difficult. Sometimes making silly measurements. I also play bridge and found I was forgetting the contract. I blamed the BT medication that I had been put on for arrhythmia and high BT after starting pred and had combinations changed but it didn’t really help. Then Afib started!
Yes. Pred is a fierce medication but entirely necessary. I have learnt that 0.5mg is big and gets bigger as you reduce so you do not mess with the reducing. If you work from home you can pace yourself privately or anyway more privately than in an office. Accept what has happened, don’t panic get to know the new you until the return of the old. And good good luck.
I dont write this ‘lightly. Pred nearly ended our marriage last year, after 42 years of great joy & happiness. The drug turned me into somebody completely different. Quite appalling. I have managed to get down to 2mg & it’s better, but I still have to watch for the ‘emotional dragon’ to appear. I never thought one drug could cause so many side effects, think I’ve had them all!
Thanks, it’s never been rocky before, & we were lucky to have so many years. Now, it’s OK, but I feel it’s still not back to normal. If I coukd get an appointment with my doctor (none available until mid September & not possible to book one then), an appointment with different rheumy (sent 3 emails in six months asking if I still need the appointment) and neurology (appointment for end September, been waiting 3 years to see a person, so booked our holiday, last week they changed it to the day we fly…& when I explained & cancelled, I waited, & now have one in May2024). Also, I’m fighting to get more pain relief. The receptionist said I don’t need to talk to the Dr I’d like to, all the details are on my notes!! With 8 named diseases, the other Dr needs a good hour to read before we talk! Vent over. Just hoping this holiday will go well, feels a bit make or break (last one was good until Aunt’s stroke, & then her passing away). Thanks for your lovely comment, I aired it in case there are others who are so bad with pred side effects! S x
Now, it’s OK, but I feel it’s still not back to normal.
Ill health puts a great strain on any relationship, whether it’s one person or both… and not sure it ever returns to the ‘normal’ it was before… but then what marriage. long term relationship ever stays exactly the same. .. circumstances change/people age/work becomes retirement….. etc, etc…
Would say your relationship [like mine] due to military involvement changed a great deal over the years and threw up lots of challenges, as you have got through those, you will get through these latest ones … 🌸
I agree. I think our problem is that I was pretty sick about 14 years ago, had 8 surgeries in a year, & one left me paralysed from waist down for six weeks, with no knowledge of expectation that I would walk again. I had over 60 intravenous courses of antibiotics in 3 years. At least I don’t wonder why my immune system is fedup!! We went through so much then, came out stronger. But now here we go again. Would be OK if it was just PMR, it’s the quantity of ‘diseases’ & the growing number of specialists etc. We had a very different military time from most. Short story, we met on a base. I was due to transfer, but was allowed to lengthen my draft there. After that I was in portsmouth & David in London, but only for six months, then I swapped draft with a girl who had a boyfriend in Portsmouth & was stuck in London! David served 27 years, but less than two at sea. It was challenging workwise, but my civvy job was harder, tbh! We were together all the time, bar six months, truly lucky! I agree with you, nothing stays the same for anybody. I would say our relationship grew stronger, & it was only when I became so angry, so bossy, & violent, that it was at risk…until we found out it was steroids (& some other drugs for different illness) that was causing it. I’m down to two, but still getting some secondary adrenal issues. Specialist thinks I’m Addisonian. I’m keen to prove him wrong, ha ha!! S x
No, I’m just normal…but fairly mad with a bad sense of humour! I’ve always been an ‘open book’ regards medical issues, & you never know, some of this may help others here! Thanks so much, S xx
There are lifestyles that make things hard anyway - military especially and academia/healthcare can be similar. Add ill health on top of that and it can be truly awful. The first half of my marriage was with one person - after cancer the other half was with an entirely different one who was very different from the one I fell in love with.
Yes, that’s an excellent comment, & yes, it’s the other way round a bit as I’m the one who became entirely different! I didn’t realise it was so bad until last autumn. As you know I am desperately trying to give up the tic tacs, but it’s my third journey down from 5mg in a year! I’m down to 2mg now, & better in myself. If I could just get some appointments & treatment for the rest of my medical problems, I think David would be less concerned & much happier! And I might sleep more than 3 hours a night! But I try and make an effort, too…but yes, means I don’t rest enough!! My Dr is happy for me to stay on 2-3mg indefinitely. I am waiting to see a rheumy atm, but not about my PMR, possible Ehlers Danlos, & inflammatory arthritis or sero negative RA. I’M really sorry you had half your time marred by your husband’s cancer, that’s so long. Tbh, I assumed (should never do that) he’d had it for a few years only, as I only joined this forum then. Hugs, S x
No, in his early 40s he had a major brush with what is usually testicular cancer but it was a mediastinal tumour, behind the sternum and all mixed up with lung. Nine lots of chemo got it from rugby ball sized to tennis ball sized and the lung was removed - and that led to many of the later problems. He was a medical miracle but in those days when you survived you were just left to get on with it, no counselling for him or us. He was never easy - on the spectrum somewhere - and that just made it more extreme. He buried himself in work - always did but promised he'd do less. For about 6 months!!!
Wow, I’ve never heard of that, Shane he had to lose a whole lung. I can see how that would cause trouble later. Hm, sad timing, no support for you both, but, yes, if he was on the spectrum anyway, he needed more help, not less, with it all, very tough on you. Oh, yes, the old promise, give up work. It took me a while to see the sense of it, but then I had a huge redundancy package offered..& we moved area completely & then it was easy! S xx
When you say "on the spectrum" are you referring to the autism spectrum? I was diagnosed three years ago, at age 50. And like many diagnosed later in life, it explained so much about my past, especially my relationships.
Looking back I would say that for me it has been more of a gift than a disability. But it has definitely been difficult for my past partners. I have a lot more compassion for them now (in hindsight) because I understand now what I wasn't able to provide them.
My current wife is also on the spectrum, which is really great because we understand each other better. The hardest thing is that she has more support needs than me. Her autism has a ton of sensory challenges, including proprioception and interoception. So along with being the sole income generator, I typically do most of the domestic work too. But now I can't. I've just come to realize all of the things I can't do, and I have asked my friends to help. We are all meeting later today to discuss forming a care team to support Jill and me.
The good news for Jill . . . like your husband, I have been promising her for a year and a half that I would work less, and I haven't been able to. Now, with this disease, I have. And I'm shooting to go lower... 20 hours a week max. I hope I can do it. And I hope I can reduce this hyper emotionalism stuff that is so hard for her.
Here is a photo of us from two years ago (she looks quite young, but she's 47).
And thank you for all the help you have given me here.
47? Just a bit older than my daughters, She's just a bairn! My older daughter was finally dx'd with ADHD during Covid - accounts for my problems with her as a teenager - but she qualified as a nurse and is about to start a specialist practitioner MSc! That is going to be interesting! The other one has traits and works at junior doctor level in the ED.
Yes, after two open heart surgeries, the second due to endocarditis, OH is another person. Whilst I can understand, especially as second op failed to correct valve and the only solution would be a third op which he won't consider, but........ it is hard on both of us. PMR not helpful, especially as 'invisible', so his needs come first. Not wishing to turn site into marriage guidance but it does help to hear others admit to difficulties. ❤️
I don't think it qualifies as marriage guidance - but it is important to show that any nasty or long term condition changes you and your relationships. Rarely for the better and often very difficult to come to terms with (how I hate that term!). And then there is the bereavement factor, not necessarily death but the loss of a lifestyle - it probably sounds crackers but I realised a few months ago just how much I miss my holidays! And not the luxury many associate with their holidays but camping!!! I was watching a local programme about the South Tirol Camping Club and laughing at the people my age saying how they'd been doing this for 20 years and obviously thinking how long that was, I started camping, in a tent, 60 years ago. I'm a bit old to go back to a tent but I am going back to the next stage up back then - a VW camper! I hope it works ...
I was on 60 mg prednisone IV in a “famous” USA hospital with possible GCA as an RA complication. They couldn’t care less about autoimmune diseases.
Told the hospitalist that I was “jumping out of my skin”, pacing & had a voracious appetite. The head neurologist ignored my distress & the nurse told me I ‘d “have to get over it” !
I asked for a psych dr who told me to “take myrtzipine”, never ordered it & refused to order a sedative because “they are addictive”.
My son was told to come & pick me up & the nurse basically told him I was mentally ill.
Nope - these “medical professionals” near caused me to commit suicide. Med errors are the 3rd cause of death….
I had not been in a hospital for decades, since my children were born.
When you are severely ill with RA, as you know, you can’t think straight, are in severe pain & at the mercy of medical professionals.
I am educated, respectful & agreeable, w/good medical insurance.
After seeing many bad USA rheumies and getting worse- an external pharmacist saved my life when I was at death’s door, by helping me get the correct med from manufacturer’s program (SRP $6-8,000/mth for 30 tablets)!
It makes me so angry RA patients can’t get help: Valium, Ativan, or Xanax or codeine & OxyContin - but USA drs quickly prescribe “big gun” RA meds w/out concern or warning about their devastating &/or lethal & side effects!!!
That’s simply appalling, quite dreadful. I was on another medication, not related to PMR, and, at the same time, was in week 8 of bad chest infection, & agreed to take steroids, rather than be put in hospital. The two together made me mad, quite simply. Yes, to the point where I pleaded with David not to go out as I was afraid of what I might do. I then looked up a forum which contained other peoples’ experiences with the other drug, & tapered off within 3 days. I guess a lot of people don’t get side effects, or only mild ones & ‘cases’ like you & I may be rare, but I’m happy to air it here in case others on this forum are having troubles of this type! A few days after stopping the other drug I was better, & once off the steroids (two weeks course) I was fine! I fought tooth & nail not to take steroids again, but PMR has no alternative, really! I didn’t know medverrors are the 3rd cause of death…but I do know that I read all the contraindications before I take anything new! ‘jumping out of my skin’, I was like that until I was down to 5mg, completely wired, but also deathly fatigued! S x
The figures for patients hospitalised because of drug interactions or reactions are quite horrifying. Take them out of NHS hospitals and it could cope ...
"A study conducted in Switzerland reported that 56.2% of patients are exposed to one or more major or moderate potential DDIs (pDDIs) in internal medicine wards "
It’s common sense that severe inflammation would also inflame our brains! And why not warn us about the meds’ side effects, benefit/risks?
A psych prescribed me 5 psych meds at once, rather than 1st considering the side effects of mtx & pred and discuss with gp or rheumatologist. Team approach? Nope.
I honestly believe it’s all about $$$ now, with most drs, & they get away with it unless they kill a lot of patients!
How many people with physical diseases are misdiagnosed as mental, commit aggressive crimes, or commit suicide because they are on the wrong meds?
Oooooh, 5 meds at once, no way to tell which helps, which doesn’t! Sorry for you. Hm…dollars, well, probably in USA it counts. Ah yes! I was lucky to look it all up, I read so much stuff, & found my own solution. It wasn’t the fault of my doctor, the two meds are taken by many, for inflammation reduction, & help others, which is why I won’t name the other drug! My reaction was rare (I hope!) S x
Indeed. I understand that AI diseases often require a lot of trial & error. However, ignoring my distress & not discussing alternative meds is unconscionable.
Luckily, I read the medication guide & product information literature, too.
A kind USA pharmacist, not a physician, saved my life, but couldn’t undo the joint damage,
Recently, I read that grapefruit juice is contraindicated with my current meds, but prescribing rheumy did not tell me!!!
That’s awful. Yes, grapefruit is contraindicated with one of my husbands meds, but they didn’t tell him, I read it! I think the pharmacists should have a role where the meet the patients more & help them/advise them, but they don’t have time for that. We now have to request our repeat medication 5 working days before we need it…it used to be 48 hours. I’m sorry you suffered irreparable damage, that’s very bad indeed.
I took a steriod injection at the beginning of the GCA/PMR and the side affects mentally were frightening.....I changed completely becoming angry, out of control and hallucinating. This was clearly down to the drug. I took various drugs to control my epilepsy one of which made my mental health very bad to the extent of regressing and trying to crawl. This was clearly down to the drug. Please do not think your side affects are instead a reaction to loss and grief over your former good health. You will have those too but they will not affect your concentration and ability to work in the way you describe. The latter are down to the drug and I hope you get the help you need with this from your doctors.
Well done for reaching out to your friends Emanuel. Trying to juggle all the balls in the air as you have in the past is going to be much more difficult while you are wrestling with PMR, steroids, and the huge change they have brought to your life. It’s never easy to ask for help but you have cried out now and I hope your people will rally round you and be there for you, just as we are here in this community. Best wishes, Chrissie
Yes I think prednisolone can mess with our memory if there is a weakness lurking there.I take a herbal tablet for memory function.I think it helps a bit.I got them from a health shop.Good luck.
So pred is weird stuff. You may feel fine on a level at one time, but if you go back up, it may not be the same. Part of the illness is gritting teeth and knowing it will definitely improve in time.
HOWEVER your work is important, pressured and part of your identity which is why you are feeling particularly stressed. Stress will amplify anthing you are feeling through pred/pmr. I suggest again that you find a good counsellor with whom you can talk things through, and develop some solutions.
One thing most, if not all, people on this forum share is being overly conscientious. It makes us valuable but also we hate not doing our best or letting ourself or others down - so sometimes we need support.
Me, too. And USA drs’ refuse to prescribe sedatives or pain meds- because “you might become addicted.”
Well, I’m old - so I wouldn’t become addicted if I had committed suicide from excruciating RA pain & the side effects of “big gun”RA meds & prednisone that drs prescribed without hesitation!
I work in the field of drug policy. The worry over addiction and the demonization of opioids is terrible for pain patients and others for whom opioids provide relief. Over-prescribing here in the USA was a problem, but in 2016 when they cracked down on prescription opioids, all they really did was push a million people into the black market. And now we have 100,000+ deaths a year from fentanyl, the most powerful and dangerous opioid there is.
So true. Valium was prescribed like candy in the 60’s, “running to the shelter of Mother’s little helper”.
I’m an old, “tee-totaller” & have been forced to resort to drinking alcohol (which I don’t even like), for RA pain relief & sedation. All because drs’ won’t prescribe RXs needed (w/warning) for relief!
I can get cancer, DVT, & cardiac arrest from RA meds- but it’s okay with drs that I might commit suicide from RA pain, insomnia & anxiety!
Hi Hisue I have lupus and other AI diseases. I’m in the USA and I’m sorry your experiences with medical personnel was so awful. While it’s true that changes have happened in last 10 years regarding pain meds I want to share that I don’t have that problem of being prescribed what I need for physical and mental health. One thing important for your provider (s) is to really know you. My internist and I have 25 years together.
Anyway, we are such a big country and good doctors do exist. I hope you find yours. 🙏🏻
In the US, my family drs & specialists all retired when the gov started imposing regulations & fines on them for failure to update electronics & meet new regulations. They were mostly bright, talented, & dedicated & compassionate.
The “new breed” university system medical-professionals are a whole different story. Nurses & drs with fake hair (swinging orange, purple pink hair extensions to their waistlines), fake nails, fake eyelashes; medical assistants that don’t know the metric system w/wrinkled scrubs & dirty sneakers?
Now involved in big University medical systems & Medicare - it’s like an “in & out” Burger restaurant. Drs have nurses return calls in 48-72 hrs, if your lucky, prefer e-mail, & vm tells you to go to the emergency room (after hrs, weekends or if their on vacation). Wait 3-6 mths for an appt- okay to die in the mean/time.
My experiences with severe elder onset AI RA med providers, USA, has been deplorable & caused me irreversible damages.
P.S. And they send you a “patient satisfaction survey” after each visit. They cannot be serious.
“Despite having the most expensive health care system, the United States ranks last overall compared with six other industrialized countries—Australia, Canada, Germany, the Netherlands, New Zealand, and the United Kingdom—on measures of quality, efficiency, access to care, equity, and the ability to lead long, healthy, and productive lives.”
The Hippocratic Oath, once mandatory, became optional many years ago.
This may seem trite, but the fake nails especially annoy me. Unsanitary and can interfere with putting on gloves quickly. What has happened to professionalism? What has happened to cleanliness? Instead, we have overuse of antibiotics. Having said that, I admire people who enter the helping professions: nurses, EMTs, etc.
it took me months to figure out it was the PMR/prednisone making me feel like a different person one who no longer had a crisp memory I work with almost 3800 people only a handful are new many I have known my entire 35years there I used to recognize them the second they walked into my office and the particulars about their file but now somedays I forget their names and why they were in my office two weeks ago I struggle to spell words I have used my entire career! My physical limitations had already made me feel like I should be let go then toss cog fog on top it’s been trying so between my struggle to IMO give 100% and the “millennial work force” who has an entirely different idea on what a 40hr work week is I am retiring I have my 40+ years in I used to love my job but now I cannot wait for the weekends lol
I didn’t know that my brain was also inflamed, as were my joints, with severe elder onset RA!
The “hijinks” of people at work now have become ridiculous. Just call an 800# and see how much wrong info you get or order something & get the wrong item &/or wrong bill!
And drs who e-send RX scripts or order tests to get rid of you quickly rather than explain, cure or relieve the disease!
I think you should see your doctor immediately because these can be a sign that you have had a stroke. Memory loss and emotional outburst can be symptoms of a stroke depending on where that stroke happened in your brain.
I had the exact same kind of symptoms when I got down to 12 mgs. And had the first Covid shot. At first I didn’t connect it to the shot or the Pred, but after being off the pred for a year I am getting much better. It was terrible I forgot names, very important in my business and lyrics to songs. I would walk into a room with a definite purpose but forgot what it was I had come to get. Any how, it is slowly getting better and I feel very blessed. I hope this all settles with you very soon.
Your experience on prednisone in some ways mirrors mine: I had started on 20 mgs and for 3 or 4 months told to tapered down, all along with no side effects...none! Then I started flaring really bad and couldn't handle it anymore so in desperation I ask my doctor to go back up to 20mgs. Well, this handled the pain all right, but not long after the depression anxiety, and insomnia set it; and it was bad. Along with that came the weird sensations of depersonalization - like I wasn't myself, that would happen periodically. I suspect, like you do, that this was some sort of hang over effect from being forced to taper to low too fast, and when I had to go back up my body and hormones couldn't handle it anymore. From there I started tapering again and am now down to 2 mgs. I am somewhat better as far as the mental side effects go, but still not out of the woods yet. I agree 100% with you about the physical effects of PMR being one thing, but the mental side effects on many levels worse. I thought about some of the alternatives to prednisone, but some of the side effects are just more of the same, so I decided to just stick with prednisone and taper slowly down. The striking similarity is the fact that the side effects came on after having gone up, is what I can't figure out. Anyway just though I would post to let you know are definitely not alone, if that's any consolation.
Thank you. Yes, this is what has me baffled too. In my case, when I hit 5 mg, it was the low cortisol symptoms that got me. Constant nausea all day long, and fatigue, and who can handle diarrhea ten times a day?! So I went back up. First to 9 mg (I just wanted to be below ten thank you). Nothing. Then to 15 mg (getting desperate). Nothing. Still worse after nine days, and the PMR pain came back too. So then I went up to 20 mg and finally got some relief. The Nausea and diarhhea disappeared, with only mild PMR pain in the evenings. But the fatigue is still here and now the emotional symptoms are terrible.
Why? Why? Why? I just don't get it. That's why I proposed the idea of a "runaway flare." If you go far too low, maybe you can set yourself back months, somehow.
If it's a temporary "hangover" from going far too low, how long does it last?
I once saw a post where a guy wrote " prednisone is messing with my mind " and that pretty much summed it up how I feel... In so many ways it has messed with my mental well being, and now I can only hope it will go once I am totally off it.
I am grateful that you opened up this conversation, that you were able to share what you did. You are not alone. My personality has changed since the start of PMR and prednisone. One of the hard parts of this is people in my circle (family) cannot comprehend the "why" of my personality change. They have no knowledge of what PMR is and no experience with having taking prednisone. If they did a google search, they would find only sparse information and some would be false.
We "don't look sick." We don't have limb paralysis. In most cases, there has not been an emergency trip to the hospital. We name the condition we have and get puzzled looks. "You have what?" "Oh, I think my friend has that. She has trouble with one arm when she tries to dye her hair." (That's not PMR.)
You are not alone. I look forward to regaining my former self. Thank you for sharing what you are going through.
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