Is it steroids or PTSD: I was diagnosed with PMR... - PMRGCAuk

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Is it steroids or PTSD

Purplelamp
Purplelamp

I was diagnosed with PMR and I am on my 3rd week of Prednisone. I started at 30mg and am now on 15. All pain gone but I feel really weak & strange. Racing heart and flushes. GP says it a side affect of steroids and will settle as I reduce. I am waiting to see rheumatologist. In 2016 my mother became ill and I took her to the GP. He diagnosed her with PMR and put her on steroids. Within 4 weeks she was diagnosed with terminal lung cancer and died 8 weeks later.

When I was recently diagnosed with the same symptoms I was convinced I had cancer. GP has been sympathetic and said PMR can mimick lung cancer symptoms and sent me for a chest xray last Thursday. I havent heard anything so so far I presume I’m ok. I made the mistake of googling PMR and cancer and got conflicting info.

I cant understand whether I feel so strange & weak because of the steroid affects or whether its post traumatic stress because of my mother and I am displaying anxiety without realising it. Lots of others seem to be ok on the steroids but I had to take a week off work sick last week as I felt so bad. Befire diagnosus I had pain but I wasnt anxious like this.

32 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Strange reduction regime- 30mg is high starting dose for PMR, and to reduce by half within 3 weeks is not the recommended way. Usually patients stay on initial dose for at least 4 weeks, and then reduce much more slowly than you have. No wonder you are having side effects and feeling so rotten.

Your GP may be sympathetic, but seems to have little idea of how to treat PMR , or maybe diagnose it. What symptoms did you have for him to diagnose PMR?

I wouldn’t say others are ok on steroids, especially if they work. Did you not have any time off work when first diagnosed?

Unfortunately anxiety is a side effect for many on Pred.

I had severe pain in shoulder, back, hips, neck and was very stiff. I also had high esr crp over the last 4 months on monthly blood tests. The pain went within 2 days of me starting the pred. The pharmacist at the GP insisted I would be ok dropping from 30 to 15mg as I’d only been on 30 for a week.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Purplelamp

Yes you might be okay dropping that amount, but as I said it’s an odd way of treating PMR.

I think it would have been better ( and more usual) to start at a slightly lower dose and stayed on it for longer. But your GP obviously has his own way of doing things - this method may have worked for other patients on the past.

I guess you have to see how things progress from here.

Hi

When I was first diagnosed I had to take 4 months of sick

I only stated on 15 but anxiety was huge for me I became scared of going out as was unable to walk in a straight line or judge when it was safe to cross the road .My balance was awful .

Maybe taking some time off would be a good idea

Purplelamp
Purplelamp in reply to Rose54

Thanks for your reply. I only work 10 hours a week. I carried on going in the first week but felt so anxious I had to go home. Ive had a week off but am going in tomorrow, first day back. I will see how I go on.

Rose54
Rose54 in reply to Purplelamp

Good luck I worked 35 hours a week but after a flare in April 2017 cut hours to 25 a week I do 5 hours a day and that is enough for me .

Good luck

Daisychain12
Daisychain12 in reply to Rose54

Oh Rose you poor thing. I am so sorry xxxx

Rose54
Rose54 in reply to Daisychain12

Please don't be sorry

I still have time to come home and rest and then am able to other things

It was a case of putting myself first I will retire in June next year .

So looking forward to that

Daisychain12
Daisychain12 in reply to Rose54

You have a wonderful attitude and it’s fundamental to getting by with this condition. I’m very proud of you. Thank you for sharing xxx

Rose54
Rose54 in reply to Daisychain12

Gosh with all you have been through my life is easy

you take care and enjoy your day

Daisychain12
Daisychain12 in reply to Rose54

Darling thank you it really makes all the difference to have someone say that they see my struggles and think I have done ok. Bless you for that but please don’t be so quick to dismiss your own ordeals which have been significant xxxxx

Hi Purplelamp. It is all abit scarey to start with isn't it. Even more so given your family history and bereavement, though pred also induces anxiety so you have a double whammy to cope with!

My GP also prescribed 30mgs but I held off and saw Rheumy before I started pred. Rheumy started me on 15mgs as he said that should be enough to make 80% improvement in symptoms. So I can see what has happened in your case.

I am convinced PTSD kicked my PMR symptoms since this coincided with losing my Mum. I remember saying to my sister Crikey I lost my Mum and have become her overnight! (Aged 20 years overnight, stooping, shuffling, couldn't bend and in pain).

Even at starting dose of 15mgs pred I had the symptoms you mention such as palpitations, sweats, fatigue and anxiety. Palpitations and anxiety dwindled at 12.5mgs for me, and were pretty much gone by 10mgs. However, I still have sweats and fatigue for a few days each time I taper so I put these down to pred and withdrawal.

It does get easier once you grow to understand your symptoms and responses. I have to say I am lucky to have a part time job with flexibility around when I work, but in the early days didn't work for a couple of months until things stabilised a bit.

I also sought behaviour therapy (different to counselling) since I needed to accept life would need to be in a slower lane and also change my behaviours in order to gain back some control! The therapy was free on the national health.

My message at this stage is be kind to yourself, rest when you need to and listen to what your body is telling you. Time, (in our case) will heal.

Thinking of you.

Oh Marilyn I am crying at your post. I don’t mean to be a drama queen again or hi jack the thread but you have helped so much by sharing this experience. I just did a new post which you have inadvertently helped me with. Thank you xxxx

Thanks so much for your reply. It has made me feel so much better xxx

Mitziecat
Mitziecat in reply to Purplelamp

Hi Purplelamp.

Time certainly does heal. Like you I am convinced that my pmr was escalated following the tragic death of my brother,plus a flu like bug. Some minor symptoms may have shown previously but it came out in force following the bereavement. That was 18 months ago and have tapered slowly following initial dose of 15 mg in June 2017.

Keep positive and as others have said, time, patience and being kind to yourself will help.

Omanain
Omanain in reply to Purplelamp

Just want to endorse everything Marilyn has said and wish you all the best.

Sorry to hear you are struggling with your PMR diagnosis and being on pred (at a fairly high dose to begin with and then tapered quickly). This combined with your mom’s experience would certainly generate anxiety! Pred side effects can include mood swings, anxiety and depression. Pred withdrawal can also impact mental health, as can the diagnosis of PMR to begin with.

I had PTSD for over five years caused by my work in the field of sexual trauma. Hearing stories of sexual harm for 18 years left me anxious, hypervigilant about mine and my family’s safety, and plagued with sleep disturbances/night terrors. My employer was very invested in my wellness, and in fact paid for monthly therapist appointments, gave me wellness $ to spend on healing, and reduced my hours. Eventually last fall I retired early prioritizing my mental health (while ignoring my physical health all along).

Three weeks later, after moving into a new house with my new husband, PMR symptoms emerged. I went 5 months without a diagnosis and this time was the darkest for me....not knowing what was happening to my health. With diagnosis came shock, disbelief, anger, sadness, loss, and yes, a new kind of anxiety. But at least i knew what I was dealing with, and it was not fatal. Once I came to accept my condition, and started utilizing my supports, including this wonderful forum, and made lifestyle changes (healthy low carb/sugar diet, balancing rest and activity) the anxiety melted away. I have experienced things getting better now 5 months since diagnosis.

So as someone who has had both PTSD, and a diagnosis of PMR, I will say both included anxiety, but both also got better.

Sounds like your mom’s similar diagnosis and resulting quick passing is triggering you. This combined with being on pred and tapering quickly and absorbing your new diagnosis are all likely pushing your anxiety levels over the top, Do you have access to a therapist? Consider seeking support to sort it out. Mine is invaluable and has helped me through both.

We are here for you to support and provide info. Others have more insight and experience than I as I’m still relatively new to PMR, but it does get better. As for PTSD, I have totally healed. Hope this helps. Take good care and keep us updated.

Oh what a wonderful inspiring post. I had no idea you had been so brave and suffered all that. I am full of admiration for you and so so happy that you are feeling better. Wish I could hug you. Xxxxx

Thanks for your reply. Knowing that others have felt the same as me certainly helps. When my Mum became ill I was her carer and I kept a log of her treatment. I think the months this year of me being recalled after each blood test, knowing they were abnormal but not knowing what they were loking for has taken its toll on me. When they said PMR I checked my Mums log and was horrified to see it was the same as what they thought she had. I had a heck of a job with her on the steroids. She lost her mind almost and I had to keep taking her back and begging for more tablets. I think once they knew she had cancer they focused on that and abruptly stopped her steroids. She went from being strong and independent to crying and weak so quickly. I have read they have to monitor you closely in the first months after diagnosis of PMR just in case there is something else causing your symptoms. The fact that my pain has gone gives me hope I have the right diagnosis.

Purple darling OF COURSE this is triggering your sad memories. Firstly it is to do with your mum, arguably the most significant person in your life and also it’s recent. You are also ill AND on steroids which are notoriously unsettling. If you weren’t anxious and freaked out I would be very surprised. You need a support network. Can you get counseling? If so I urge you to do it immediately. If not then find internet counseling or ring a phone service. I can’t stress enough how important this is. Also tell your friends and family. Don’t make the common mistake of trying to tough it out. Reach out and say you need help or if they cannot help then at least tolerance. Read lots of our posts. Please update us xxx

So sorry about your loss and struggle. Watching your mom must have been so difficult and emotional. Please accept my heartfelt sympathies.

My mother is 95 and declining. She knows she is “not herself” which makes things worse. My sister and I have finally found a compassionate caretaker. We do not live close by so it is challenging.

Be gentle with yourself.

Hug to you and your sister. It’s heart rending isn’t it xxx

oh when I started on the steroids - I nearly lost my reason. I started on 20mg by my GP - then the Constultant changed it to 15mg. But I just couldn't cope with the side effects - I knew I didn't have a choice but I ended up having to leave work one day becuse I could NOT stop crying - and I mean CRYING - not little tears in the corner - I just had no control over it!! Walked down the street STILL crying and all spaced out - very scary. So hopefully it will settle down for you. Just might help to know that you are not alone - the steroids can bring about all kinds of anxiety, etc., for some people. It will get easier when you get used to the meds and reduce the dose. Best of luck.

Powerwalk that would have been horrible. Was it crying from rage or sadness or just generally feeling awful!? Half the time it’s hard to know. I feel for you. I keep trying distraction and that’s where I get all riled up. I can’t use the things I want to use for distraction because of the fatigue so it’s a vicious cycle. It’s vital to find strategic ways to manage it and that is where therapy is so useful xxxxx

Than k you for your comments I think a mixture maybe - I was very spaced with the prednisone. Felt really disconnected and when the consultant confirmed that I'd be on it long-term I don't know if it all came crashing down on me. Usually if something didn't agree with me I wouldn't take it. But there was no choice with this. And I walked the house like a caged lion couldn't stay still. I've never felt right on it. Probably like a lot of people. God yes the fatigue. Just visiting family in Canada and I feel like hell. Trying so hard to enjoy. I took a bit of extra steroid to see if it will help!! The joys. Hope you are doing ok. Been a bad patch for you too. Best wishes.

Power I get it. I get so much aggro from docs when I show them my long list of drug intolerances or allergies and they imply I am neurotic. I have such a bad time in antibiotics I was able to deal with that by using preventative measures with UTIs and other infections. I hated that with pred there was no Choice I had to take it. Having said that it’s been brilliant for the horrific pain. I’ve paid a price mentally though. I’m down to 13 now and get a lot of agitation. Can’t settle. I hate it. So let’s keep in touch and help each other. Love and hugs xxxxx. Linda xxxxx

PMRpro
PMRproAmbassador

Hum - personally I think your GP has it the wrong way round. PMR is the name given to the symptoms of an underlying disease process and there are several that can cause it. All the others should be ruled out before deciding that the diagnosis of choice is the PMR we talk about here.

The anxiety probably is a left-over of the week at 30mg. Why do they do that? I really don't know what they think it achieves, the pred has no effect on the underlying inflammatory cause of PMR so there is no "hitting it hard" as some rabbit on about. This rushing about with high doses, suddenly dropping to a much lower dose and trying to force reductions is what makes life hell on earth for so many PMR patients.

I assume your GP has sent you for the obvious x-rays to rule out a cancer for you? And I really agree with the others who suggest a bit of time off work and some talking help is a must for you at present. Your mother's death is enough to be the stress forming the final straw for an already bashed-about immune system over the previous weeks. But the immediate thought for you has to be "It's the same as mum."

As DL says - sympathetic the GP maybe, but some rather more practical knowledge and help would be more use. Is there a choice in your practice?

Daisychain12
Daisychain12 in reply to PMRpro

Yes!!!! The stupid “ hit it hard” comments!! Grrrrr!

I am back there again on 1st October for a review. I have bloods the week before to see how my esr crp is doing. He said at one stage my crp was in the 20s and was down to 8 in July and my esr was 90 down to 52 in July. I must admit my first thought was cancer. I had the chest xray last Thursday and havent heard anything and Ive got a few more tests they are sending me for regarding stomach problems

I had which seem to have settled. I managed to work today from 10-3. I felt alright first thing but went a bit weird about 1.30pm. Feel alright again now.

Thanks for your replies everyone xx

Hang in there. Please keep us up to date xxxx

My daughter cannot take prednisone because it causes her to have depression and anxiety. She was on prednisone on and off before she was diagnosed with actual rheumatoid arthritis. I noticed the big change in her mood one day and we pinpointed the prednisone. Soon after she was diagnosed with rheumatoid arthritis and is on Humira with no side effects so far. (And a big note on her file that she can’t have prednisone).

As for your mother.....The PMR diagnosis was probably a “differential diagnosis” to the lung cancer. I had a similar situation. I had the PMR symptoms and this was discovered first. So I started on the prednisone protocol. But I still felt something else was going on because I was still so fatigued. My doctor referred me to a hemotologist (because my iron levels were low) and this doctor happened to be an oncologist. He recognized that the PMR was probably a result of the inflammation that I was having due to a cancer diagnosis and he did a lot of blood work. In my case, I was finally diagnosed with non-Hodgkin lymphoma - which I treated for. After I treated for the cancer (with Rituxan), all my PMR symptoms disappeared. I am now in remission for both. And no more prednisone.

Now, I’m not saying that this is your case. But I do see where you would be worried. Everyone reacts differently to prednisone. And you may NOT have a differential diagnosis going on. It may just be PMR. I suggest you follow your gut if you are not getting satisfaction from your treatment. In your mother’s case, she probably had the lung cancer going on first, and the inflammation from that brought about her PMR.

I was lucky to have discovered my cancer while I was still stage 2b. My symptoms were profound enough for me to seek other opinions. A differential diagnosis could be other auto-immune diseases as well - not just cancer. This would bring about extreme inflammation in the body. Not everyone will have other conditions going on. But talk to your rheumatologist about your concerns.

Thanks for your reply. I am so glad they managed to find and treat your lymohoma. Yes I think my Mum had the cancer for a long time before she was diagnosed. She was being treated for COPD (which she wouldnt admit she had) and I noticed her arms and shoulders had gone thin. She had bad shoulder pain similar to what I had and said she thought she had pulled it cleaning her windows. My Dad stopped breathing and died in the bed beside her in the February and within a week we were at the doctors with her and 3 months after him she died. It was such a shock. Both of them. I know the GP said they had tested me for ovarian cancer and I tested negative. I am at the general surgery tomorrow as theyve said my gallbladder has a big stone in it. This came to light before the PMR diagnosis. Fingers crossed they sort me out xx

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