Sometimes I think I know best and clearly I don't. From now on if the rhematology nurses advise me to do something I will.
Following on from my previous post last week its been confirmed by GP ive got shingles, because I was a prat and didn't go to see GP last week I'm past the stage anti virals will be affective.
Honestly I am my own worst enemy.
I also thought I would push on and take my dose of mtx on Friday (nurses said take a break but no Einstein here didn't listen) and I've now had another stonking migraine which is entering day 2.
GP thinks I'm run down and could be reason I'm getting the migraine, she's prescribed an anti migraine drug (sounded like triptain?).
I will be having a week off from the mtx.
I think I'm asking questions nobody can answer at the moment, I want to know if it's the mtx or being run down / shingles which is giving me the migraine, I so desperately want to find a DMARD that works and my hands are getting slightly better i think on the mtx and its only been 4 injections.
I will say I was well and truly told off by rhemy nurses (rightly so too) I feel a fool !
Please don't see this as mtx being the problem it's not, it's me thats the menace plus I don't mean to scare anyone with the shingles stuff, I always get it at least once a year so didn't get it because of my arthritis or drugs .
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Marionfromhappydays
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Don’t beat yourself up M. By nature we are battlers. I still believe I can just push through. Still haven’t quite got the hang of it. 🙄 I pushed through myself today ... wished I hadn’t 🥺. Hope things improve quickly M x
Aah, don't beat yourself up about it Marion. I expect we have all done similar things - I know I have! I think it just stems from desperately wanting to feel better ....... I imagine we can all identify with that impulse!
Hope you're OK soon, I'm just over shingles myself......3rd time......but luckily I got the antiviral. Still have a couple of sore spots on my scalp. Definitely keep off MTX until you're over it, it's a shame , but you don't want a long-lasting infection . Take care.
You were just trying to help yourself, nothing wrong with that but you won't make that mistake again so at least you have learned a valuable lesson. Don't be so hard on yourself, I hope you feel much better soon. xx
I have got a badge on it says keep pushing through still got a lot to learn! Look after yourself. I now have headaches most days and some feel almost migraine but is it part of RA or the drugs I am not sure so have accepted it might be part of the process for now and see what happens further down the line!
I get re occurring shingles each year in my scalp (each year it chooses the left or right hand side) and it is horrible. So as soon as I get those sensations I get the anti virals asap. There was only one year I didn't quite get them in time as a locum didn't believe you could get it in your scalp and boy did I know about it for ages after and ended up having to bring my eye test forward as my eyes hurt. Thankfully I was ok, so I understand how you must be feeling and hope that you don't suffer too much with residual nerve pain after. It is a battle field and we always try to keep going so don't beat yourself up, it's energy wasted when we need to be kind to ourselves. Hope you feel better soon x
My GP once gave me a lotion to attempt to soothe things but as it is in my hair combined with my arthritic fingers it was not as simple as shampoo and ended up everywhere and it was to be used sparingly which give the challenge of getting it in the right 'spot' was nigh on impossible.
Tristan. It's what I have in my injections. Not sure what's in the Zomig nasal sprays but they can't be used in the same week, or something. I wonder if the mtx has opened you up to infections. Hope you feel better soon. X
I've still got the migraine, chemist hasnt got drug until after 4 today, im priming my husband and have put his trainers by the front door so he can run and get them for me ha ha 😉
I was doing OK, I really think the mtx was making a difference, I could get up and not think "ooh my back" plus I can now get my wedding ring on and off so swelling defo going down. I'm just pissed off with all these migraines, they are different ones from my usual (only get about 2 per year), ive got such bad photophobia with them im walking around with sunglasses on all day, I looking I should be in barbados on holiday not rainey Bristol !
Been told to email rhematology nurses back next week when migraine gone before I take anymore mtx, I think they are thinking about taking me off it. I will be disappointed as its nice to get a taste of normality joint wise but I can't keep on with these bad heads.
Hi M, if you used to always get 2 migraines a yer it sounds as though it might be separate from the UIA - if you are perimenopausal it could be that making existing headache worse rather than the mtx. For what it's worth, I think it's the case with me. The headaches I got from sulfa were not at all like other headaches I get, more like a really, really dull ache, woolly head sort of feeling. Heavy eyes, so I knew it was that and as soon as I stopped the sulfa the woolly head stopped.
The last cluster headache I got last week was stunning and not in a good way. Possibly the worst I have ever had but familiar pain, just worse and I really don't think it's got anything to do with mtx, just more of what I have always had.
It seems to be a kind of pattern, every Monday I get migraine that lasts about 2-3 days so I think its the mtx. But I don't want it to be as its working otherwise 😕
Sorry to had really bad head last week, you do get to know whats normal for you don't you x
Mentioned to you originally I got shingles on my head and eye. The shingles gave me the worst headache I have ever had!!!! Then insult to injury the pain killer for that headache made me vomit so I was in a right pickle :/ my HP was an Angel though and got me through it - I ended up having to take the anti sickness tablets they give chemo patients as he was afraid I’d lose my anti-virals. Like I said I was off work for 8 weeks!!!! It knocks the stuffing out of you. And now I suffer with tri-geminal neuralgia - which us another level :/
Oh no, you definitely went through the mill ! Bloody shingles eh. I've only got a really small patch but flippin eck they hurt ! I forgot and brushed my hair thought I was going to pass out 😁
Sorry to hear this Marion😢. I had shingles last October following Rtx. Long story but the gist of it was that the rheumy sec wouldn’t help me to get anyone to call me back for five days so I was delayed in taking Acyclovir but even though it was five days after blisters appeared I was told by a dermatologist to still take the anti vitals. The AV’s relieved it a lot as did some menthol cream. The feeling on a 6x6 inch patch of skin on my hip had gone numb.it returned to normal after a week. I was shocked I got shingles as I don’t usually get anything apart from a Rtx catarrh side effect, but I was told you can get it after Rtx if you are run down and I was at that time. I didn’t have a bad head or severe shingles but it made me feel zonked. The blisters were only on the side/hip. I hope you feel better soon and try take it easy. 💗 x
Don’t beat yourself up, I’m sure we all do it, I know I have - last week in fact! Accidentally gouged my leg last week, knew I should have had it looked at, but no I didn’t want to go to the Dr or hospital and thought I’d get away with it. Ended up having to send photos to the Dr 6 days later, who ticked me off as it needed a stitch. Now on antibiotics 🤦♀️.
I use the sumatriptan injection for my migraines - work well for me. Hope you feel better soon 🤗
10 years in and I still do things I know I shouldn’t! I tell myself it’s a good sign as it means I haven’t become a victim to the disease (what twisted logic is that...🙃). It’s so hard to truly accept that we have a chronic disease that will be with us all the time.
One of my few benefits from having RA is that I am now a much more patient person, sometimes it is so much better to sit and wait than push through. Hope migraine gone today.
Blimey darling you are suffering aren't you. I am not going to tell you off as you have already by those that look after you. I will send you a hug instead.xxx
I don’t think your post was meant to but it did make me laugh!! I think we have all got a little bit of I know best in us!! Just take care of yourself, lots of healthy fruit & probiotic foods to get you feeling better, take care & get well soon 😊
Sometimes you've just got to see the funny side! Thank you i do fancy some fruit actually so might be a good thing i had this, weeks me off the doughnuts ha ha x
I was just about to say the same as Durrell, I think we have all thought at sometime "I'll sort this out myself I know myself best " please dont beat yourself up about it I'm sure you're on the right track now be kind to yourself take care and get well 🌷🌷
Idiot !!!! and depends where the Shingles is because it follows a nerve pathway. The Aciclovar anti viral will help but not stop the Shingles unlike when taken at the first indication of it arriving. Try good old Calamine and I was put on Pregabalin for the pain. Yes its addictive, but i didn't care and just tapered off slowly. Don't bother with CBD ointments I found the claims rubbish, but Deep Freeze helped once the scabs had dried. Last year the Capsicasan cream was prescribed but unavailable as the chilli harvest failed. To reduce the pain please ask GP for something like Pregabalin as I had a few days in hospital because of the extreme pain to lie on an airbed. I feel for you because it was so nasty. I still take Aciclovar in half dose to stop it coming back as twice the area has been sore but it has held back full blown Shingles. I'd suggest it might be the Shingles giving you the headache as the pain is very debilitating and at least did affect my sleep patterns. Such an awful virus and once you've had it it does return I'm told if you get run down as its an opportunist virus. It can be passed onto children as Chicken Pox.
One thing in our GP's surgery are lots of flags about the vaccine, so I after the event and being under 70 asked why younger and immune suppressed people can't have it, to be told that its a strict not for the under 70's the GP didn't even know why as he' d be happy to do it but can't.,
I think I've gotten these shingles in same place about once a year since I was about 10, never taken anything for them just ridden out the pain but I think the MTX has made them a bit worse this time. Silly me. I won't be doing this again.
I'm waiting to pick medication up from chemist as it won't be available until after 4 but I didn't hear properly what GP said it was she was prescribing so it might be what you said ? She said it was specifically for migraine though so perhaps not ! As you can see I'm not at my best at the moment ! I think is she said slap myself with a wet Mackrell i would just to get rid of this flippin bad head 😭
Thanks for your reply and sorry you've had these too x
I feel for you it was pain worse than childbirth and continues relentlessly too !Just try to indulge yourself and ask about prophylactic anti virals as I don't take MTX but advised RA in itself gives it more of an opportunity to come back. I was told continue with AZA as it would make little difference but it was also ok to stop it for a couple of weeks but because Shingles can go on for months and it did, that the RA would get worse so it was a loose, loose situation. I carried on and the Pregabalin really helped.
Wishing you all the best for next week , hopefully the new gip will make you feel like a new person x
The shingles are in a trail from the nape of my neck to behind my left ear, always the same place. At least my hair covers them, they are small but mighty !
Yes I am run down,drinking my own weight on tea to get over it x
Every Dmard and biologic I have been on has caused me to have migraines apart from my current one Himiri. But I have suffered from migraines from the age of 30 they were always hormonal migraines whilst on my periods. My mother had shingles she really suffered from them poor you.
Oh your post so rings true for me too not the shingles side of things but sometimes thinking I can push through and know what’s best for me. Usually in my case it’s not seeking help until things become unbearable and then being in a right pickle. Hey ho we all live and learn. I hope your shingles improve and your migraine goes too and most of all really hope you get to stay on the mtx if it’s helping you. All is not lost yet I’m sure on that score. As others have said be kind to yourself and maybe occasionally do as you’re told lol.
Hi Marion, sorry to hear about the shingles. I just wanted to say that when I first started taking mtx, I had terrible migraines everyday, I reduced the dose a tiny bit and they went. Since then I’ve been able to increase it again, with no problems. It’s not unusual to get migraines with mtx and if you can stick it out, they will eventually go x
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I'm being pulled about like a puppet
Confusing advice
Off meds because of Shingles, but maybe answers to other concerns…..
Heavens above what next?!
