Hi all hope you've all had a great weekend and pain free,
well i put my patch on frday at 10.50am was fine all day then at 10pm i had a wave of nausea come over me and i couldnt stop vomiting, sweating, and my head was spinning like i had just come off the waltzers at a fair ground , i was shaking from head to foot and i couldnt walk properly i was swaying all over the place trying to get to the bedroom to lye down, my husband took the patch off immediately, within an hour vomiting ceased just felt slightly nausea , it was really frightening how fast it came on.It has took me till today to get back to normality. I couldnt focus saturday and it zapped all my energy i slept most of the day and as i was very weak i stayed in bed all day, my breathing was laboured too, although it had stopped all my pain.It says on the leaflet these are side effects and to seek medical advice as soon as possible, my hubby rang NHS direct as the GP was closed and they said i'd had a bad reaction he had done the right thing taking it off and to see my GP on Monday. This whole experience terrifies me i had similar experiencies on the three dmards i was given for my RA . So it has left me feeling very shook up and frightened and this was a pain killer, I would rather take a pain killer that just takes the edge off the pain as Ibuprofen did than suffer this.
I cannot go back onto Ibuprofen as this my doctor thinks is giving me high BP does anyone know of any better pain killers to ask for that wont knock me off my feet ?
Thank you jus, i replied to your blog about the side effects so i know you understand. thank yo for your kind support . Hope you are feelin a bit better now. xx lena
I think with all the problems you have had with the usual starting meds, your next step should be to ask your rheumatologist whether anti-tnf drugs would be better for you. They don't tend to have any of that kind of side effect and most folk tolerate them incredibly well (though of course there is that very small risk of more severe side effects).
hi earthwitch , i am awaiting anti tnfs to be delivered i'm being put on enbrell when it comes. This was suppose to be a pain killer that i took , so much for pain killer. lol I've decided to try and go without the pian killers and hope my anti tnfs work and take the pain away when they come . This experience has put me back to square one where ididnt want to take the drugs. lena x
Hi john, the Ibuprofen apparently gives me high blood pressure, it was the Matriflen that caused this reaction so fed up now and of course because of the reaction i've had my joints are starting to stiffen again today and there is a deep ache in them. I hope this doesnt start a flare as i have only just got over one a few weeks ago. I know its trial and error with drugs it just gets you down when you go through something like this. Thank you for your kind support john . lena
yes it does get you down when you think you arew doing well then it takes you down and you have to get back
How horrible and scary for you. I think Earthwitch is probably right about anti-tnfs but you should perhaps ask to try Naproxen as it is another anti inflammatory and possibly doesn't have the implications on your BP but your GP will be the best person to advise. I hope there's some drug that you don't react badly to and that you find it very soon. Tilda x
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Hi tilda, i am awaitng my anti tnfs to come my rhuemy said it shouldnt be long now. But now i'm have the fear back about the drugs making me ill. It has took me a while to accept them after the severe side effects i experienced from the Dmards only to suffer this reaction from the pain killers. The Gp thinks the Ibuprofen is causing my BP to be high thats why he precribed the Matriflen, i did ask for Naproxen but he said that is the same as Iburofen so wouldnt prescribe it. My thoughts are to just take the paracetamol and suffer in silence now as i am frightened of what side effects will come from any other pain relief. Thank you for your kind support Tilda i'm going to see if i can get an appointment today to speak with my GP, will let you know how i get on. Just so fed up of it all now. Hope you are okay after your drug holiday i know youve gone through the same thoughts as me and i hope you get your mtx soon and it starts working again for you lena xx
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Thanks Lena - I think your situation puts mine in perspective although this secondary Sjogrens and the Hydroxy nausea did need working out in order that I go back on MTX only tomorrow. My blood pressure is iffy but not enough to cause them worries as long as I only take Naproxen for a few days to get on top of a flare like the one I've just had. I was a bit worried that I would find it flared up again once I stopped taking it yesterday as directed - but it hasn't really although I've got fluid retention and my skin (scalp and ears) have now joined in with the drying up and itching of my mouth and eyes so I've spent an hour cleaning, oiling, squirting, brushing and really do feel like a very dried out piece of fruit that's temporarily had a good soak now! Hope this palava sorts out a bit when I take the Metoject MTX again tomorrow. Good luck with anti-tnfs I'm sure it will be fine - try not to expect bad things as my rheumy once said to me! X
How horrid for u big hug. I've jus had bad reaction to steriod injection ended up in hospital. I have now decided to not take any drugs other than paracetamol. I've joined a gym swimming 3 times a week has really helped, my spec said to build up the muscles helps to hold joints in place . Stops a lot of pain. Then paracetamol to take the edge off. Hopefully it will take the fluid away might be worth tryingbaqupuncturex keep smiling
Hi Artyone, So sorry to hear you have had a bad experience with the steroid injection . I hope your feeling better and on the mend now.Touch wood i have only suffered bad deppression with the last one i had the other two were great really helped, but as i said the last one gave me depression and did nt work so well. They say it can be my body is not responding as well to them now ? I joined an Aquatone lesson last week and really enjoyed it. Just hope this isnt going to put me back as i have really bad stiffness in my joints this morning and a deep ache in them. Goin to see if i can get an appointent today with GP to see where i can go from here, thinking about just taking the paracetamol and not anything else as i too only wanted something to take the edge off the pain and ibuprofen and paracetamol did this. I deffinately want to
continue with my aquatone lessons. thank you for your kind support . XX lena
I had a very similar experience from one tramadol tablet. Yet my dad takes 2 a day for back problems & doesn't feel a thing. Hope you find something that suits you better xx
Hi Juanhu hope you are pain free today and feeling well in yourself. Yes i cant take tramadol as i too have bad reactions to this so i feel i'm quite limited to what i can take , everyone is different i know and we all react in different ways just seems like my body doesnt want to digest anything i take. I am going back to GP today to speak with him let you know of the outcome. thankyou for your kind support. lena xx
Sounds like panic attack to me: I sometimes wonder if all these 'magic' drugs are worth the bother, considering none of them are safe/stable enough to trust when the RA pain is debilitating but not 'chemically dangerous'. Shame for the UK chemical industry if we all stopped taking such things ... (or is that too cynical ?)
Hi Golf, yes i agree very similiar but i suffer with anxiety from time to time but it was alot more severe than any panic attack i have ever experienced. My head spiriling was nothing like i have ever experienced before and i couldnt focus at all. Really frightened me may be panic came into it as well and made it worse i dont know but i was extremely frightened and unwell all of friday night to which my husband would not sleep for fear something would happen to me. The NHS said it was a severe reaction to the meds and it should subside which it did by Saturday evening but left me with no energy and extremely exhausted from it all. Seeing GP today so will let ou know. Thank you for your kind support . Lena
Sadly, If I stopped taking drugs, including Fentanyl which I can tolerate, then I would be just about bed bound let alone housebound.
Can't see my post here, but I know I did reply at length about my experience of Fentanyl to Lena and hope the GP can suggest something else to help the pain for you.
Hi Julie, Thank you any way Julie i really appreciate your support i wonder what happened to your reply?. I dont think i am as bad as yourself and other sufferers on here maybe its because i have a high pain threshold i really dont know . My consultant seems to think my RA is quite severe but i find that hard to accept but then again i find the whole thing hard to accept any way.i do have really difficult days where by i find it very difficult to get out of bed and the pain can be excruitiating, I really dont know how to judge it. So sorry you would not be able to get out of bed without it i'm so glad it helps you. i know differnet meds dont agree with everyone and its trial and error. Maybe i dont need that strength of pain killer and it was too strong for me thats why i had the reaction makes me wonder? Hope you are having a pain free day take care julie love and hugs lena xx
Thank you all, Just had a call from my the homecare team about delivery of my enbrell coming Thursday 18th, so i pray and hope now that this will be okay and not make me ill. Fingers crossed . Thank you all for your kind support will let you know how i get on. Thank god for this site!!! I dont know what i'd do without you all. Hope you all have a pain free day . Love and soft hugs lena .xx
Good news Lena! Hope that makes you feel better now Enbrel is almost with you. No reason to think because you had severe reactions with something like Fentanyl you will with Enbrel.
I am sitting here rigid ... doped up to my eyeballs on the Fentanyl 50 but still not anything like enough pain relief. Just taking the edge off it and that's a mighty powerful dose. :-(. Just hoping the hospital will get back to me today as I have told them I am ready to start via messages to staff but can't get hold of Rheumy nurse as I want to check they actually registered me with the healthcare company when I said yes to Enbrel nearly a month ago, but no one is getting back to me. I almost begged for someone to phone me when he was in on Friday and was promised a note would be put in front of them, but nothing. Each day is so painful. Anyhow let's think good thoughts for you, Lena, and Hope your Enbrel works fast, and let us know.
oh dear so sad to hear you are sitting waitng for your enbrell in such pain . I do feel for you Julie . Its not fair that we have to wait around so long for our meds. If they dont ring you today get back onto them they will soon ring when they get fed up of you calling! I hope they do ring you today and you get sorted and i hope it works wonders for you. My Rhuemy nurse has just called as my husband rang her on Firday she has said its a bad reaction to the morphin in the patches and not to take anything else with it in. She said try to hold out on the paracetamol or something mild as enbrell is coming on Thursday i may not need anything else. She is so helpful i'm so glad i have a really good rhuemy team. I know alot of people dont have that . I hope you get good news soon Julie and you get some pain free days . soft hugs and best of luck to you hun . take care lena xxx:))
Hi Lena, I have always had a very high pain threshold until January and no steroids allowed anymore. I always found it hard to say I felt bad or ached but since this awful downturn, sad fact is I do. I have quite a few fused joints (hip, wrist, elbow, ankle) and these damn massive immobile knees so as this is osteo pain I do think this is what causes the madness for me and it is a different kind pain to the RA.
You do have to be quite severe with your RA Lena to get the go ahead with a biologic. I have a friend with severe back/disk problems due to injury many years ago and he's a toughie and a big bulky guy but he went to pieces when he took Fentanyl 12. Just couldn't tolerate it.
I have been in denial about how bad my RA has been over the years at times as
I was always so very sporty and fit and tough.
Anyhow I am so pleased you have got your Enbrel sorted and I really look forward to your progress!
Hi Lena, I have always had a very high pain threshold until January and no steroids allowed anymore. I always found it hard to say I felt bad or ached but since this awful downturn, sad fact is I do. I have quite a few fused joints (hip, wrist, elbow, ankle) and these damn massive immobile knees so as this is osteo pain I do think this is what causes the madness for me and it is a different kind pain to the RA.
You do have to be quite severe with your RA Lena to get the go ahead with a biologic. I have a friend with severe back/disk problems due to injury many years ago and he's a toughie and a big bulky guy but he went to pieces when he took Fentanyl 12. Just couldn't tolerate it.
I have been in denial about how bad my RA has been over the years at times as
I was always so very sporty and fit and tough.
Anyhow I am so pleased you have got your Enbrel sorted and I really look forward to your progress!
Hi Lena I have two great rheumys and they won't be aware this is happening at their level and have always been given great care. It is this lack of communication and being given the run around for starting the biologic. The reluctance of admin staff to pass messages on and being told by a secretary I would have go to A&E and be admitted if I felt so bad. I will wait to see if I get my message passed to the person and my call returned today but I think not. I think I am an afterthought and they will have people in the clinics for infusions etc who will be priority today and rightly so but you would think there should be someone who can give me a start date?? I see my rheumy next for routine appointment in mid May and wonder if I will have started in by then. Not sure now. I shall have to leave a helpline message tonight if they don't phone today. If no response to that then my husband is going to leave one. If still no joy then my GP is already not impressed with my lack of response and poor communication this last month, so I hope he will fax them. xx
oh dear this is awful, i do know what you mean about people being given infusions beng priority, but to leave you hanging so to speak is just not acceptable. Can you not ring your GP and have a word about it they may be able to help. Next time you have an appointment with rhuemy would it be worth you complaining about the lack of response you've had to your calls it may make a difference in future you never know. I feel so sad for you,how terrible , its disgusting makes me so mad. I'm glad at least you have two great rhuemys because we all need someone on our side at times like these. I have been back to the GP, he agrees i had a severe reaction to the morphine in the medication, it rang bells when he said they were morphine based. I had morphine for pain relief when i had my hystorectomy and they had to take it off me due to a bad reaction as soon as he told me i told him about this and he said "oh dear never mind just go back to the ibuprofen and we will check blood pressure in 4 weeks time, if still high i will give you blood pressure tabs". Give up !! the whole point of it was because of my BP. My rhuemy has said to try and hold out on the paracetamol as my enbrell is coming Thursday and i might see a big improvement, so i'm going to do this instead. I hope you get a call and you get your injection soon and they havent forgotten you . I really do feel for you. the Softest hugs hun . lena xx
The good thing Lena is you won't need ibuprofen too much longer! Enbrel time nearly here! Diclofenac gave me a slightly high BP and it returned bsck to normal but now I suspect up again these past few weeks. I am totally spaced out on the Fentanyl 50 but pain not improved enough.
Yes, I will tell the consultant in mid May about the lack of response and also leave a helpline message tomorrow and ask for a response by Thursday. Or another week drifts
by.
Thank you for your hugs and many back to you, and only a day or two now to wait for you!
xx
HI have bee away but also v poorly.. no new meds for me in sight yet.. I was wondering if you have tried a tens machine??? thats drug free?,I find they can be helpful, like your new piccie x
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hi Ali, so sorry you are poorly hope you get better soon. I have a tens machine but to be honest where would i place it to help with the pain in wrists, hands, elbows and knees? I would'nt know where to start lol. Sorry to hear no news on your meds. I have woke up this morning and have less stiffness and pain is moderate, cant keep up with this RA i was so scared it was going to flare after the side effects of matriflen the weekend, so glad it hasnt maybe it will calm down now. Thank you for the compliment on my pic it was taken on my birthday last year . soft hugs lena xx
Hi Lena did put a long reply up but iPad trouble again , it either sends things twice or not at all! Think I will have to delete some games!
I sorta know the feeling! Reacted to methot8 ! Sulphasalasin e, Remicade, amitryptalline so far but strangely ok on Humira and arava and morphine, took a while but think the combo starting to work although my feet still hurt!! So keep going sweetie, you will get there in the end !!! Xx
Hi Allanah, its horrible when you have to go through meds with their nasty side effects to find the right one it does so knock the stuffing out of you!
I'm feeling better today woke up with moderate pain and stiffness just hoping its gonna die down as i felt my RA was going to flare up after being ill over the weekend because of the awful side effects, but fingers crossed it seems to be going back down i hope.
Seems we all go through this with meds , dont you just hate it? You are always so happy and yet you have so much pain you are so brave allanah i take my hat off to you. Im okay though i'm learning to pick myself up and start again, taking a leaf out of your book lol!
My hubby came home with a lovely surprise for me last night, we are going to stratford upon Avon the weekend to see clelebrations for shakespears birthday, hes booked the hotel and everythings all arranged, i'm so excited he really has brought a smile to my face he is so caring. I love stratford it pours of history and the park is so lovely when the weather is good we have often picniced on there. So looking forward to getting out the house for the weekend and down to startford, just hope RA does not play up fingers crossed. Heres hoping we have a lovely weekend with lots of sunshine for everyone to enjoy. Hugs Allanah xx lena
That sounds amazing Lena, wot a lovely guy. My OH is being a selfish Pratt at the moment! I am hoping it passes quickly, he's not getting tea tonite, that generally does the trick!
hi allanah i must say he has been brilliant with coping with all this Ra stuff, often the carers are forgotten about. They do have to handle quite alot. Oh dear i see your OH is in the dog house, i'm giggling to myself typing this as i can just see you know giveing him a side ways glance and muttering under your breath at him lol. You will make up and all will be fine again either that or you will fire him out of the caravan window.lol xxx soft hugs hun lena xxx
Hee Hee, he came in with a takeaway........he knows me so well, but I got a big hug too, what a lovely man , Hee Hee aren't I a bitch! Enjoy the weekend and how the heck did we get here froma nasty drug reaction blog xxxxxx
oh allanah i have been in fits of laughter glad you made up . Your not a bitch if we dont keep them on their toes they would take the mick hehehe, i think secretly they like it that way. Hope you enjoyed your take away and making up with OH lol xxxx :))
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xx lena
lena x
Hope that makes you feel better now Enbrel is almost with you. No reason to think because you had severe reactions with something like Fentanyl you will with Enbrel. 
Ongoing flare - naproxen doesn’t work!
Nausea and Vomiting...
Info please 
Methotrexate and ibuprofen?
