I've had a couple of headaches again the last couple of days. I only just feel like I am coming out of that horrendous flare with progressing headache, that lasted 5-6 weeks. Energy levels are slowly improving too. But the headaches are currently the bane of my life. This one is back to the "migraine headache with myalgia" (as GP describes them) pain and aching behind the one eye, that I have experienced before, many a time.
I have also had little pains in my jaw and neck the last week - lingering flare thing I think. But I am sure this is all linked, headaches and facial pains and lupus flare.
The children are now off school for just over 2 weeks now and we have guests arriving on Monday for 5 days. They are great guests and will help and my children are so excited. I started getting the spare room and beds ready today and am now shattered!
It's always the way with me. We don't plan too much, for my sake, but when we do have plans I get exhausted in the prep, before the main event has even started!
I still have those steroids tablets in the cupboard and now that I have had my 2nd MRI to check this syrinx cyst and my sacroiliac joint, I feel that I am very tempted to take 5g a day to help me get over this flare and maybe reduce the headaches. When I was on steroids last year, the headache and other symptoms virtually disappeared and I felt alive again. Should I? Shouln't I?
(By the way, the MRI report hasn't been received by GP yet. I asked yesterday when I went for my smear - oh joy! Really hope it's reported on and I can get a copy before appointment in London on 21st!)
The Rheumy Nurse has made their feelings very clear. But I'm so tempted to be naughty and defy this. Which actually is not like me. I usually stick to the rules. But I am sick and tired of feeling sick and tired.
Grumble over. 13 days and counting.
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Wendy39
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So have you been instructed to not take steroids at all? When I posted here a couple of weeks ago, agonsising over whether to try a temporary top-up, someone (it might even have been you!) wisely said, "Well, if you can't take them to help you feel better, what the devil are they FOR?!" (or words to that effect).
I have increasingly been operating on the "listen to your body" principle and feel better for it. Even if I drop dead tomorrow, I won't regret it
You've got a lot to deal with now, so whichever you decide, be kind to yourself X
I have asked Rheumy Nurse about steroids a couple of times, including during this recent flare, but her response on behalf of Consultant was No! Not unless you want osteoporosis, diabetes, renal failure or lots of other nasty things. This has all been part of my correspondence with my MP and the hospital. I did tell her I thought her zero steroids policy for me was cruel and inhuman! Whoops. 🙈 But it's not their quality of life being effected is it. I'm talking myself into it now. Thanks for your reply.
Paradoxically, my consultant has been urging me to stay on a higher dose of steroids for longer than I want. My worry has always been - aside from the principle - that I have lots of metalwork in my hip and leg and am paranoid about the danger of bone loss and femoral head necrosis. From my reading of the literature, it seems that fracture risk rises after 3-6 months of steroid use, even with low doses, and declines after steroids are discontinued. There's a summary here medscape.com/viewarticle/77...
It's not an easy balance to strike; is your rheumy/nurse open to discussing ways you could counteract increased fracture risk, like taking Vit D and regular exercise? In any case, you clearly do not have adequate options at the moment, and the rheumy has a responsibility to explore further options with you x
I think she does. But she thinks she doesn't. I have been told by the hospital that my GP with a specialist interest in skin is in charge of my care, not my Rheumy. As I have SCLE with Systemic features, but they think it's skin only. (GP in lieu of a Consultant. There isn't a Consultant Dermy in our hospital).
Rheumy has tried to discharge me a couple of times, she says a Dermy can look after me. I objected and said as SCLE is an overlap of DLE and SLE I should be under both.
That is one of the reasons I went to my MP. I am now paying privately to go to London on 21st, that's what I'm counting down to. Hopefully someone with expertise knowledge, understanding and a willingness to help, plus to discuss flares and my options.
As far as Vit D is concerned I am photo sensitive and my levels were normal when checked in Feb 2014, just 4 months after diagnosis and being told to protect myself from the sun. I asked my GP WSIIS to recheck it recently - thought it should be checked more frequently than every 3 years. He refused. Said the test was relatively expensive, they don't do it routinely and even if he gave me a supplement it would have no bearing on how I feel. But I know it's important with long term steroid use too.
So really hoping this doctor in London can properly advise on flares and medication, can tell me if I can take steroids for flares etc. I'll read your link now.
Of course, I remember your sorry saga now! It does seem that they have got the wrong attitude from the get-go. Surely they should be thinking, "Here's a patient who is not currently feeling well, and who needs some more support. Let's sit down together and work out a plan to met her needs." Rather than, "This is what I am prepared to offer. Prove I am wrong."
I have also been suffering awful headaches for the last week, during a flare and just don't know what to do to get rid of it. I just want to lying down in a dark room with my eyes closed. Unfortunately that's not very practical. I just wake each morning and before I open my eyes try to asses if the headache is still there! I usually take a 5mg prednisone daily dose but my consultant has suggested I increase it to 30mg which I am reluctant to do as the side effects are horrible. I understand your frustration, but do you really think they will help? Steroids are an amazing thing but do have downsides. Think carefully before you resort to them. Take care xx
Hi. I've only ever taken 2 courses of steroids for Lupus. Both last year, before I started my MMF. I took 20mg for 2 weeks, 15mg for a week, 10mg for a week and 5g for a week. So 5 weeks in total. It had a really positive effect on me and I didn't have any side effects. No headaches at all. So, now I am thinking I have lupus headache / inflammation in my head and the steroids would help. How about you? Have you taken higher than 5mg before? Have you had 30mg before?
I take a daily maintenance dose of 5mg of steroids along with MMF. I have taken 30mg and declined the dose weekly like you said. The side effects where very uncomfortable, I became very sweaty, the hair on my body grew thicker and the hair on my head grew thinner! But as I have been in steroids for a long time, I have to have bi-annual bone density scans and my last one showed my bones are thinning and a this is now a concern, hence my hesitance. I also have renal failure (a thank you to lupus for that gift😀) so the steroids are used to keep my inflammation low to try to prolong the life of my failing kidneys.
I can't say I always notice it helps with higher doses, but we are all different. I do hope that you find a way to make it better. If you do let me know!!! Take care xx
Sorry that the headaches are still lingering on and on... I be tempted to shift the flare with headaches as soon as possible, you deserve a break. It would also be useful to know if the 5g is a help and you can discuss it with the specialist later this month how he feels about helping flares that arise with or recommendations what else to do ..... Feel better. Ml
Thanks Maggielee. I was thinking it might be helpful to know if 5mg helps with headaches and fatigue. I know some on here are on lower doses of MMF along with a low dose steroid, to spread the risk as it were. But ultimately I've had a flare, 6 weeks with only diazepam and bed rest advised for 36 hours. It's not been enough to get me back up. Xx
Dealing with flares is definitely on my list. I have never been advised how to deal with them, even when I have specifically asked during a flare. It's terrible isn't it! X
Yah, seems that prescribed meds should help us (according to their guidance/med books) and that's the answer to our illness, it would be nice if they just asked how are you coping with so many changes in your life or it must be hard being told you can't go out in the sun or there is a high possibility or probability that you will feel tired a lot and how to cope with it... Hope you do get some answer's.... ML
Hi Wendy, I was given the option of a depomedrone injection or 28 days of 5mg Pred by the rheumatologist and decided to go for the tablets because of my drug sensitivities so I'll have more control if there's a problem, I started them yesterday. I did have a five day course of 20mg a day last July which helped my pain but actually made me drowsy , this is the problem I have with many drugs, I've been in a flare since the day after I got back from seeing the rheumy with constant migraine and headache pressure in my face and awful nerve pain behind my eye, my scalp is so sore too, the last few days it's been a bit easier but I can feel it's on the cusp so could tip back into migraine very quickly, I haven't had it go on for this long for some time so I'm praying the Steroids might ease it...watch this space! I'm out of options low dose steroids are the only other option at this stage.
I think you're right it is cruel and inhumane not to let you try them and as long as we understand the risks and recognise side effects and are monitored while taking them then they should give them to you even if it's a short course especially if it helped you before.
I don't think medics understand ( they can't possibly if they haven't suffered themselves) how desperate we feel to manage each day, to get a break and have a little glimmer of normality to enable us to get through the day without this relentless pain and fatigue. My Gp doesn't like steroids and said to me these are a last resort, although it's not up to her it's the rheumatologist orders! I don't want to take them, I don't want to take anything but when needs must...!
I thought of you when I asked my GP if I can have my Vit D checked and B12 and she was fine with it she just asked when I'd had it done last and it was September. Tell them in London what the Gp said about not needing yours checking, I'd be surprised if they weren't a little disgruntled by his attitude! It really is important especially for you with SCLE to have it checked!
I hope you are able to enjoy your visitors and it's not too much for you, rest up when you can, I know it's exhausting before you've even started, if they're easy visitors and help out then hopefully it'll be a pleasant time for you too.
Your reply is lovely. We all just need words of support and understanding and encouragement sometimes don't we.
Your symptoms are so similar to mine. This headache I had with this last flare, progressed over 5 weeks to me being a sobbing, blubbering wreck in my husband's arms, as I didn't know what to do with myself! Pain relief wasn't working and I had no idea how to cope and get through it, as I've never received advice on flares - and I'm 3.5 years since diagnosis!!! Makes me angry. Of course that helplessness and lack of hope, only makes things worse.
5 weeks of a headache is totally debilitating. The fatigue, you just drag yourself on with what you need to do and somehow get through. But headaches consume me and I can't carry on when it gets that bad.
I have experienced the new symptoms of tenderness on the top of my head and pains in my jaw and neck. I was worried that this may be temporal arteritis at first but apparently that doesn't go away on its' own. Plus my blood tests were fine, so highly unlikely to be that if bloods were OK??? Or so I've been told.
I think it fits with my lupus migraine / CNS involvement. I get inflammation in my head. End of.
I really hope this guy in London is experienced enough to grasp this all very quickly.
I need my diagnosis confirmed, meds checked and advice on how to deal with flares and advice on use of steroids and advice on my iron levels and vit D. Poor bloke. I hope I'm not expecting too much form him! We do have an hour....
In the meantime I can't face these headaches continuing with my children home for Easter and guests coming to enjoy themselves. I've taken 5mg of pred this morning. I'll do a week of 5mg only. It'll be a good experiment for headaches and energy levels.
I can truly relate to everything you say Wendy, we are pushed to self medicate sometimes when we don't get the help we need, because of my declining kidney function last year my GP told me under no circumstances must I take my Arcoxia which was the one drug that got me through and helped me to be more active, without it I could barely walk some days. I could manage 7 days without then all the pain would creep back in and the more I did the worse it would be, but no alternative was offered except the generic Hydroxy that I couldn't tolerate! I've had to source Plaquenil from abroad which I'm able to tolerate better albeit only 200mg a day, I think this has helped but the fatigue and the migraines persist. Anyway there were times when I did take Arcoxia because I had occasions that I had to get through like last summer when my brother and family came over from Kenya to stay for three weeks, I had to get through it somehow but I didn't want to just get through it I also wanted to enjoy it, it was lovely but it was really tough going!
I often think that if I didn't have this awful fatigue that I could cope with everything else so migraines AND fatigue are right up there at the top as my most debilitating symptoms.
I'll be interested to hear if the pred helps with your headaches, I'm hoping it'll help mine too even to just take the edge off and makes it more bearable ....fingers crossed for you and tbh I'm only just recognising when my flares are flares if you get my drift , I feel poorly all the time but then go through phases of being completely floored and debilitated especially when I've pushed myself so these times must be my 'flares' where everything is so much worse...fatigue, migraines, joint pain, fluey and other weird stuff etc!
Like you I'm so glad this forum is here, other than my husband who is marvellous there's no one else to talk to in the same way....it is a lifeline.
I feel like you in that there is my general Lupus fatigue, no energy, no get up and go, then when I flare I can barely get myself out of bed and a general malaise takes over, you just go lower when you think every day is bad enough.
I look 5mg pred yesterday and 5mg today. So far so good. No headache - although still tender on top of head - no pains in jaw or face, no aches or pains. As for my energy levels. I am human. Today I have showered and dressed, got the children breakfast, done 2 loads of washing, changed a bed, hoovered the house, cleaned the loos, mopped the kitchen floor, baked a cake, tidied the house, read some of my book, checked my emails......I kid you not! I am calm and happy. Ready for my guests. If only I could be like this all if the time......
Fingers crossed for 21st. We'll see if this doctor is worth his weight.
YaY Wendy...I'm so pleased for you, gosh that must be heaven 👏👏👍🏼
Well I've managed to walk around the block this afternoon with my dog and my hips didn't hurt and my legs didn't feel like lead, I don't feel as stiff after I've sat down for a while, I feel quite chilled out too and no headache, but I do feel drowsy and spaced out! Ugh! I was hoping a tiny dose wouldn't do this to me. My GP said to stick with it if it does this, hoping it will pass🤞.
Perhaps the rheumy on the 21st will suggest a longer term low dose if it has a positive effect on you. Hopefully you'll be able to have a really good week now, I really hope you can, you deserve a break.
Long may it last 👏👏, don't OVER do it though, still look after yourself😉
I am very pleased to report that taking 5mg of steroids for 5 days made a HUGE difference to me this last week. I am so glad I took the plunge and did it. I have kept up with my guests and activities so well! We have walked on the beach and taken the children out and about. I have stayed up until about 11pm in the evening, being socialable, chatting. On Thursday we went to Skomer Island and saw the puffins who come there to breed - an amazing trip!!! It was a long day. We walked about 5 miles that day and then I came home, showered and changed and we went out to eat! We'd been out at 9.30 with a packed lunch and bed at 11pm. I could never do that normally. If I am going out in the evening I usually nap for 2 hours before I get ready and then spend the next day in bed recovering. So I have normal energy levels and felt like my old self!!!!!!!!!!! I am still me, I'm in there somewhere. No headaches either, which is amazing for me. I cannot tell you how nice it was to have a break from feeling crap. I have stopped now. A 5 day experiment has told me what I needed to know, in time for Friday's appointment. Do you know what, I think 5mg was plenty. Actually 2/3mg would have been enough to give me a boost, but I don't have any 1mg tablets, only 5mg tabs. I am now wondering how quickly I will sink to my usual lupus self.............
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