What next ?

suncatcher · 27. Feb 2009, 15:44

I have been told to come off solphalzine by the help line nurse at the hospital and they want to see me on monday first thing.
I have been having problems with the drug and some side effects have gone but what has stayed is the sleepless nights and hot sweats.. I have not slept properly for two weeks and i passed out at collage on Tuesday. I went to the GP and he said to drop it to one and he is doing tests on me thyroid and hormone levels and he wants to see me in two weeks. I reduced me dose and this has not done anything to help me sleep. This morning i was so hot I had a temperature me fingers and face swelled I felt so hot I drank loads of water and sat in a cold bath. I have felt like a pressure was building in me head and through the vains. I rang the help line which is closed on Friday’s so I rang the Rheumatolagy phone and asked to talk to a nurse which i did. they want to see me and i am now wondering what drug they will try next as i cannot tolerate the high levels of mtx i need and me body cannot tolerate solphalzine. so what next? I feel like a guinea pig. I could not take him to nursery which i feel bad about. Sorry for going on from Joanne price

woodbon · 27. Feb 2009, 16:14

I don't have RA so don't know about the drugs you use, but often if someone has bad effects from one drug, another can be used with more suited to you. It sounds as if they need to test your hormone levels, but thats just a guess.

I am sorry, it sounds really awful and I can understand your reluctence to try other things. I hope you can find something to make you feel better soon. Sorry I'm no real help. Love Sue

magenta · 27. Feb 2009, 17:56

Hi joanne,
I'm sorry to hear how rubbish you're feeling

You've not been having it good lately. Hope they come up with something on Monday. Let us know how you get on.
Magenta x

Wonkylegs · 27. Feb 2009, 18:59

try not to worry .... I know that's easier said than done!

these things happen, and there are many people on here who have reacted badly to one drug but have gone on to find another that works well for them.

I know I used to despair of finding something that would work for me, but I did in the end.

Hope all goes well for you on Monday.

elnafinn · 27. Feb 2009, 19:13

Hi Joanne

Sulphalazine can raise your temperature. My goodness, you must have had some temperature though to be sitting in a cold bath and drinking plenty of water. Have you been taking this drug for a short while? Things can sort themselves out after 3 months or so........

Thyoid problems can also cause sweats, tiredness, not sleeping at night.

I hope things get sorted for you soon,

Luv
Elna x

colinone · 27. Feb 2009, 19:33

Hi Joanne These drugs you cant live with them and you cant live without them. sorry to hear your so down I had the same problems with sulphaslaz and it’s a horrid drug anyway. I think I must be a bit like you trying this and that. It can take so long to find the drug that works for you.
I’m in the middle of a break from drugs due to infections. I am in so much pain I hardly know what to do. However inside I feel the best I felt for years. That fuzzy head has gone and I can think straight, no head aches and no feeling sick all the time. I’m at the part where I so desperately want back the drugs that I never wanted in the first place and the MTX plays hell with me. I do want to get back on the Enbrel though it was just starting to work. Its funny I never thought the drugs where doing much good but realise now they must have been. Enough about me I suppose its in the lap of the gods now or should I say Rheumy what drug they will move you onto I know it seems that you are like a guinea at times and it takes so long. Let us know how you get on Monday. Take Care and keep your chin up.
Colin
With a hug

badger · 28. Feb 2009, 02:38

Just to wish you well and hope everything is sorted out quickly.

All the best
Badger

suncatcher · 28. Feb 2009, 06:14

Thanks everyone i feel a lot better today and although i have not had a full 8 hours sleep ive had 3 instead of two and i stayed in yesturday and rested but not slept in day my body is more rested than i was but i was still hot but not the rageing temperature i had yestuday.
i feel a little brighter today. At collage i luckily was ill when i had a fellow RA sufferer with me she has other heath related probs and uses an electric wheel chair or her sofa she calls it she is brilliant. she took over acoommanied me out of the dining hall fetched me water. i had just took one mouth full of me diinner and i started feeling funny i was taken out side as i wanted to be away from every one and staggered out into the cool corridor she went off to get water the teacher and when i was feeling better i said i had not had me luch she went off to get me something. the others all my friends stood looking and me friend was talking to me about me ra tablet problems and helped me by explaining about thing to the others. they were very sympathetic but they have not heard what we go through and were all round listening they would not find it as facinating if they lived with what we do. I often wish i had something boring that every one has heard of and does not need explanations. but im glad she was there and the other they had all passed there first aid last week me friend was not on it and she dealt with the faint not the others. mind you my friend is a very strong determined lady. any way thanks for your kind words and i will let you know what they decide to do with me at hospital next thanks again joanne.

jeannie2 · 1. Mar 2009, 01:49

Hi Joanne,
Glad you're feeling a bit better. It's probably been good for your friends to see how you were. They will probably be a lot more understanding and supportive now, which is good.
Keep your chin up, lass, and hope they sort you out tomorrow. Good luck with the rheumy tomorrow.
Jeannie S

frogmorton · 1. Mar 2009, 02:38

Hi Joanne!
WOW!! What a week you've had!!
Sounds like you have something going on eh? I am glad you are feeling a bit better and that last night brought more sleep. You are doing so well to keep your course up and should give yourself a pat on the back for it.
Thank God for good friends eh? The one at college sounds great - nice and down to earth a 'do-er' if you know what I mean.
I hope this week brings a solution to your meds problems
Take care
Toni x

suncatcher · 1. Mar 2009, 03:54

jeannie wrote:

Hi Joanne,
Glad you're feeling a bit better. It's probably been good for your friends to see how you were. They will probably be a lot more understanding and supportive now, which is good.
Keep your chin up, lass, and hope they sort you out tomorrow. Good luck with the rheumy tomorrow.
Jeannie S

you are right and with the two of us it was easier thepeople at collage are a good lot. and will let youknow how i get on it wasgood of thehospitato get me in i was due to back the week after as am there every two weeks as this was a new drug i just hope they can find something that fit with methotaxate as it works and is good for me but my body can only tolerate 10 mg of it asa i am very prone to infections any way thanks for the responce joanne

suncatcher · 1. Mar 2009, 04:06

frogmorton wrote:

Hi Joanne!
WOW!! What a week you've had!!
Sounds like you have something going on eh? I am glad you are feeling a bit better and that last night brought more sleep. You are doing so well to keep your course up and should give yourself a pat on the back for it.
Thank God for good friends eh? The one at college sounds great - nice and down to earth a 'do-er' if you know what I mean.
I hope this week brings a solution to your meds problems
Take care
Toni x

thanks and the collage have indicated that they are very pleased with me i have been going in and i have all ways been honest with them i was not right before i started they said they would give me a chance. and on the xmas holiday i could not lift my arms so had a steroid which i told them about when i returned as i do not look disabled and do not show i am ill but i like the teachers to know look i dont look ill but i am as some of the others who are ill in other ways go home at the slightest thing. my appraisal was good and they have said they are inpressed with me so i am pleased but i am annoyed i passed out they wanted me to go home but i asked to stay had a rest for one lesson in the medical bloke and felt better to return to my studies as i will not let arther win no way any way thanks from joanne

nearlybionic · 1. Mar 2009, 07:44

Hi Joanne
I`m sorry you have had a rubbish time of it lately. I hope that your hospital appointment brings good ideas re treatment options.
You should be really proud of yourself for coping so admirably at college. I am pleased that you have found such a good support with the girl with who also has RA. It will probably be good for both of you to educate your college mates about RA. As you say it can be hard to make people understand when you don`t have a visibly obvious disability/complaint.
You obviously have more determination and stamina than others on your course who `throw a sicky` for the slightest thing!!!
I hope you feel an improvement soon xx
NB

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