After 3.5 month off sick, I returned a few weeks ago to work. Last week I was on holiday so took the opportunity to reduce Pred from 8 to 7.5mgs. That was 12 days ago, the last 5 nights I have been woken up when turning, with pain in the upper back and thoracic spine, that's worsened when I breathe in. The whole of the upper back and spine is tender to touch. Does anyone else get this?
Also my GCA head pains are building up on work days, ? with the pressure, as soon as I'm bombarded with work I can feel the pains intensifying. So not sure if this is all leading to a flare. I also have had my asthma flaring with 3 quite severe attacks this week, so unsure if some of the pains breathing in are related to that. Following a breakdown in Rheumy relationship I don't wish to contact him. Would you advise increasing dose again, and if so by the 0.5mgs or more?
Sunday I'm in for a challenging day as the only trained nurse on my ward working 12.5hrs, and throw into that overseeing 4 other surgical wards. Now where did I leave that broom
For those unfamiliar with my story, re my GCA I have to "manage the symptoms" without using high dose steroids, due to the long delay in diagnosising. All the time (2yrs) taking lose dose for PMR. 😏
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Runrig01
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"not sure if this is all leading to a flare" - come on, you know that answer surely?
Someone else commented in the last couple of days that their flares matched allergy problems and Keyes wondered about it not being just plain GCA but one of the vasculitis variants - can't remember the details off the top of my head. You need a proper vasculitis specialist for a second opinion (well, fourth or fifth, I've lost count...)
Pmrpro you are right I do really know the answer. I guess I'm trying to pretend this is just an adjustment period on return to work but I know it's not.
I plan to ditch the local Rheumy after last month, when he refused to accept "the godfathers" diagnosis. He stipulated rapid reduction on both Pred and DMARD. I got up and walked out.
Thankfully lovely Sarah has agreed that another local Rheumy is not a good idea. So she is taking over my care as long as GPs agree to do bloods and monitor results. So fingers crossed it should all pan out. 3-4 visits to Leeds is not that bad, they have good shops to keep me entertained.
There is a wonderful cafe (ask Sarah, one of her favourites too!) for lunch Best brownies in the world - and gluten-free! I like Leeds far better than London.
So what was the u-turn about? Sulking because he wasn't backed up? How very unprofessional.
I will do, and yes he is sulking. Apparently he expected the prof to offer an alternative diagnosis. Says he made mind up as soon as I walked in his clinic a year ago, having never examined me!
I have experienced the same. How so "lazy" of them.
Hi Runrig,
I have had similar symptoms recently. As you know I have reduced my preds to 1 mg and am not sleeping due to thoracic spine and neck pain. I feel it in my chest as well but am putting that down to costochondritis which I think I have had for a while, it has definitely worsened lately.
How can they possibly expect you to manage on Sunday being the only trained member of staff? Is that not against the safe staffing levels? There is no way you will be able to go for your entitled breaks apart from anything else. The fact that your head pains worsen when you are working gives you all the information you need about what's going on I think!
Unfortunately even senior matron just shrugs and says everywhere a the same at the moment. Lunch will be at the nursing station grabbing a bite while I can. It's my last day of phased return and "not being counted in the numbers" LOL. So my feedback on phased return should be interesting. U suspect when I tell boss re head pains worsening, another referral to OH brewing😀
I would definitely go back to OH Runrig. There is an interesting thread on the Vasculitis forum ( on here, not Facebook ) about " disability " and reasonable adjustments to take account of your diagnosis. Is the senior matron and other managers going to roll their sleeves up and come and help with the work?
LOL, a matron roll their sleeves up. I have seen the thread your commenting on, made s comment re my experience. Seems to be a theme with nurses and auto immune disorders, or vasculitis to be more specific. Iiked the comment job description should come with a health warning,
Left side of head feels like it is about to explode. Seeing GP in the morning re shared care, and pains now.
I wasn't referring to the Facebook forum ( I tagged you in that! ). It is the Vasculitis forum in Health Unlocked I was referring to. Are you seeing Sarah soon? Is the oregano in still working? Xx
Still waiting for my date, she said Gregv he Opthalmology reg was still to speak to neuro colleagues re his theory about autonomic nervous system. What is the Oregano in?
Lol. Until my return to work, it was helping the pains at back & side of head but not the burning temples. Now that life is back to normal I have mixed feelings, but it may be if I increase Pred slightly head will settle down again.
Keyes - those nurse staffing levels are pretty much normal all over the place at the moment, my daughter is in a very poor place as a result. The gubmint is talking through a hole in their heads - and then wonders why the nursing unions are finally all singing from the same hymn sheet. I am terrified we might need to return to the UK - especially if it is because we need medical care.
I suppose I am a bit removed from it all at the moment PMRpro as still on sick leave waiting for Blepharospasm to settle! Although I think my dept is lucky, ITU is usually fairly well staffed ( although very hard work! ).
Yes, Nat finds the staffing in NNU is fine, rarely more than 2 sick babies at a time. But they were forcing her to work on the kids ward because of staff shortages - never trained for paeds plus she was often the nursing qualified person and was terrified.
That's an interesting point. I remember John at VUK devoloped vasculitis, he was also healthcare professional. When you're drilling teeth, all the germs go all over the face through the mask. This was actually mentioned the dentist himself.
in reply to
Nurses have an increased risk of breast cancer etc as well. I think one of the risk factors is shift working, night shift isn't very good for your health! I hadn't thought about the bacteria aspect, I have been exposed to all manner of fancy bugs over the years.
in reply to
Well, here you go..Keyes..pathogens as the autoimmune trigger..apparently, the latest pathogen for autoimmunity is Ebola. There's so much cross infection control you can try. I often wondered about studies on meningitis / vasculitis amongst healthcare professionals, esp, dental and nursing professionals. Certainly, the dentist says, his autoimmunity is from exposure to bugs of all kind from the mist he may end up inhaling.
Generally speaking, I have been failed by how services are organised or disorganised, too. I get some weird back pain too ( along with usual sites like the neck, shoulder..)
Moving to the North is generally a bad plan for anyone with rheumatic conditions..damp, cold ..not good.. I lived in the N for 2 Years. I'm thinking of moving back...there are great things here but my arthritis got much worse over the past two yrs. I often say this..rheumatology is badly run. 80 percent of Dr don't even know how to diagnose, let alone treat..leaving patients in the quagmire. It's hard to find a decent rheumy Dr, too. Good ones had enough of politics and cost cutting measures on the NHS. Sorry to hear about the trouble, runrig..
in reply to
Ferntree, how dare you diss the North, are you suggesting that Scotland etc should be de populated??!!! Damp and cold indeed, the sun shone for at least 10 mins today, lol.
:)) please don't get me wrong. I love the N but my joints / muscles
are screaming in pain thanks to the damp, cold, long winter.. Telling me to go south lol
in reply to
Don't worry, I know what you mean! I have been longing for better weather all winter!
If it is any consolation - I live far further south than ANY of you and the weather has been RUBBISH! It wasn't a dry cold winter - until the beginning of March when it got dry but not cold. Then May has been AWFUL - we are desperately hoping for a week away further south - rain, rain and more rain...
in reply to
Thank you Keyes
People are so much nicer and kinder in Yorkshire..it's just not the weather lol x
Runrig, so sorry to hear this. You must feel as though you are going backwards again rather than forwards. Reading between the lines, it does so sound as though all your worsening problems are due to increased stress following your return to work. If you need to increase the steroid dose to deal with the symptoms, then I doubt just increasing by half a mg will be sufficient. Perhaps a good physio could check your upper back for signs of knots in the steroid-weakened muscles and do some gentle massage and heat treatment. Hopefully, your GP will have some helpful advice for you tomorrow, but it looks as though it is going to take another period off work to get you back on track.
Thanks Celtic, however I really don't want to take sick time again having only just returned. I'm sure your right about stress, although I don't necessarily feel stressed at the time. I wonder if my blood pressure is going up and putting pressure on the inflamed arteries. I do have a regular monthly massage from a great therapist I've been seeing for a few years now, so think I need to book another session. The tongue pain has also started building up which makes me feel it is more of a flare, all be it caused by the stress. I really need to be rubbed out and drawn in again. I'm uncertain what dose to increase to, as like everyone I am keen to lower the dose, as are all the experts, due to being on steroids for 2.5yr.
Huh - I've been on pred for over 6 years, I haven't fallen apart - and mercifully the attitude taken here is "If you need it, you need it".
The paed doctors were insistent my granddaughter's pred dose should be reduced because of the long term effects and the future. Fair enough - but as my daughter pointed out: if there's not enough pred, there isn't going to BE a future. Once they got it into their heads a teenager weighing IRO 80kg (because of said pred which was keeping her breathing) needed adult doses not the same dose as they'd put her on at the age of 10( and 6 in one case) she has required a bit less pred and hasn't been in resus since Christmas. Before it was every few weeks.
They claim to have thought about trying everything - not convinced. One paed consultant decided it wasn't asthma and insisted it was anxiety so nebs and breathing coaching - which had her in resus 3 times until they saw sense and went back to what worked reasonably well. Her consultant applied for a referral to the Brompton - and it has been turned down. Edinburgh (who have already nearly killed her) or Glasgow first...
It's a biologic and can work very well for brittle asthma, I think it's a sub cut injection every 2 weeks or so. The problem is the cost, very expensive!
We are members of Asthma UK, that's where I heard of it. Might be worth asking specifically about it. I take it they have gone down the Monteleukast and Aminophylline route?
It seems strange that they have turned down a Consultants request for a referral to the Brompton, is it worth appealing?
Runrig, the "experts" might be keen to get you to lower your steroid dose but if your symptoms are due to flaring inflammation which is left untreated then that puts you at risk of even worse problems.
The Professor feels that due to the complex nature of my case, where i have had GCA symptoms for 2 years, that the risk of "a catastrophic event is minimal". He feels that higher dose steroids are more likely to cause a stroke now rather than the GCA. He also feels the chance of vision loss this late on is minimal. Hence why they feel we should manage the symptoms with other meds. What he prescribed (Pregabalin) has lessened the pains whilst I was resting whilst off sick. The prospect of trying to manage the symptoms for potentially years is a little daunting. Thanks for your support x
Which is fine as long as there are other medications that manage the symptoms. When they don't and 10mg pred makes you feel reasonable - I'm sorry, I don't agree with the attitude. The risk of long-term side effects of pred are "maybe" whereas what you have at the moment is a life that is barely worth living and is in the here and now.
So if the Pregabalin has reduced the pains whilst off sick, would he be suggesting an increase in Pregabalin rather than Pred to cover you whilst working, I wonder? I do feel for you, Runrig - and I thought I was an awkward patient!!
Lol, I'm afraid not as I have already tapered up to the maximum daily dose. I just have kept struggling every time I go below 8mgs, with the exception of late last year when I persevered with the reductions to please Rheumy, at the price of increasing pain and stiffness each time. When I reached 3mgs, the pain had extended to my hands and fingers, could barely manage stairs, so went back to 5mgs. Then this flare in the GCA symptoms in January had Dr Mackie put me to 8mgs where I was last comfortable (my mistake was I meant PMR was last comfortable not GCA). Has up to 10mgs after PET scan, when I met you in London I was on 10mgs, and for the first time in a very long time I felt well all be it still with pain issues in the head. Fruustrating, as I can see where the specialists are coming from, especially after Dr Cids talk where she gave percentage risk of side effects from steroids. Although Im a nurse and had always been aware of the side effects, I was unaware of how high the risks were. Head has started to subside a bit, with Diclofenac (I am allowed to take when desperate, or tapering). Off to sleep now, thanks for all the suggestions offered everyone.
Jonny, I believe the "percentage risk of side effects" to which Runrig refers is related to aortic aneurism, ranging from 15% at 4.9 years to 30% at 8 years of treatment. Hopefully, she will correct me if I'm wrong.
Hi Jonnyup1, I have created a separate post with a slide showing the risks from steroids. It does relate to GCA patients, so figures for PMR patients are probably less, due to lower dose of steroid. Hope you find it useful
"when I met you in London I was on 10mgs, and for the first time in a very long time I felt well all be it still with pain issues in the head."
Well then, as I see it, it's back to 10mg to get back some quality of life, especially if you feel you have no choice but to work and don't want to take further sick leave. If that is successful, remain there for a few weeks and once down at 8mg again, best to remain there for longer this time around as 7.5 was obviously a step too far before.
Seen GP this morning, who agrees this is a flare and increased to 10mgs. They are also happy to do shared care with Leeds. So hopefully back to feeling well, with just the head pains to contend with thanks again for support. Did you get the slides from Maria Cid, if not I will email them to you x
I'm glad you had what sounds like a successful appointment this morning, Runrig, and I hope the increase back to 10mg works quickly to relieve your pain. No I haven't yet received the slide show from Maria Cid, so would be really grateful if you could email it across when you have a moment....no hurry, the first priority is to get yourself better.xx
Runrig, I have PM'ed you separately but just wanted to add my sympathy and support for all that you are going through at the moment.
I have just been at GP's and bumped into an old acquaintance ,who is my age, who is just in the process of being diagnosed with PMR and was clutching her prescription for Pred. I think she is lucky that I got it before her so that GP now knows we are not "too young to get it!"
Runrig01: Asthma flaring: It looks as if you are well known here. Congratulations. This site is incredibly helpful. I've noticed that no one addressed the asthma. Apparently there is a correlation between asthma and these diseases. Pred helps asthma. Often a steroid is given to asthmatics. When I was on 60 mg of Pred my lung doctor told me that I didn't need Advair 250/50 any more. Advair contains a steroid. But when I tried to reduce from 7.5 to 6.75 even on PNMpro's slow method, I suffered asthma problems. The lung doctor said that now I get the Advair back. The lower dose of Pred was insufficient to control the asthma symptoms. Advair is not a good drug. It actually causes death in some people. But for me it's a Godsend. I'm telling you my story in case it resonates with you. Along with an albuterol-type med, now that you are taking less Pred, you might need an asthma medicine with a steroid in it to keep the areolae open for 12 hours at a time. Advair is one of the meds that does this. Good luck.
Hi apologies for the late reply. I have had asthma for 20yrs and have been on steroid inhalers all that time way before PMR & GCA came into the picture. My oral steroids have been lower and I cope fine, have been down to 3mgs. I'm currently back on 10mgs. It seems in this case my PMR has affected my intercostal muscles and thoracic spine, and they feel because I wasn't deep breathing it aggravated the asthma. It's better now as 10mgs has removed the pains in back and ribs. Been around here for a few years now so many have been on my journey with me. 😃
Wow runrig01. Thanks for the education on intercostal muscles and thoracic spine. I can do yoga once a week. I'm feeling a little better and I think that I may be able to do it more frequently. I walk some. Again. I'm getting so that I'm not quite so exhausted after the walk. I have promised myself that I will get a personal trainer at the gym to help strengthen the muscles which are atrophying on account of the Pred. So I will tell the trainer and the yoga instructor about these particular muscles. I also read in a newspaper (just an aside really) that some trainers try to do things which add bone to the spine. I need this as well. Hopefully I will have the discipline to continue the exercises on my own as well. Maybe your problems can serve to help other people. You are helping me. Thank you. I am hopeful that I can try to head off more asthma problems and maybe continue to be on a roll with feeling a little bit better. 8 mg trying for 7.75 (yes only 1/4 of a mg) on PMRpro's slow taper. I hope to get back to 7.5 and then a little lower. We'll see. 7.5 to 6.75 was a disaster.
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Best brownies in the world - and gluten-free! I like Leeds far better than London.
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