Im back again sorry its a whine

theresa4

Im having a horrible time. My latest 5th biologic started to work but due to a rash all over my body Im not allowed anymore. At least not yet whilst the team discuss what to do. The doc stated my reluctance to take prednisalone didnt help (I feel really ill on it even low dose like a swarm of bees buzzing in my head). The pred and antihistamines dint help, it took 3 weeks the first dose then 5 weeks the 2nd dose for the rash to go away and it itches like hell even with the other meds.
To top it all Ive had 2 upper respiratory infections with 2 weeks between so I cant have my methotrexate either. Needless to say Im in agony and its getting worse. Ive started having falls again and i feel exhausted.

The weird thing is the tocillizumab spoiled me, the 3 days I had that were good were really good.. I felt alive, virtually pain free, and not at all tired. Now I know my 'good' days are really only bad days the rest are really bad. Its just my tolerance thats improved I suppose but it kinda explains why Im so exhausted all the time.

Im getting really sick of the waiting for decisions whilst my life gets worse. I havent been on much as I am pretty miserable but Im feeling so rotten I dont know who else to talk to that truly understands.

Im so frustrated Im not in control, the drug causes me to rash, to get infections but seems to help. Ive been informed this is my last biologic I have reached the end of the line if they cant get my body to accept it (thats if the decision to try something else with it is passed) the local PCT will not fund me any further after 5 so thats it for me.

My fingers and toe joints are twisting and are very painful to use and Im sick of being drugged up on pain killers that only dull the pain.


My daughter jsut started a new job and is paying a fortune in childcare she is no better off than benefits as a single mum (apart from her self esteem so Im encouraging her to continue) I cant even offer to do half and half with the nursery to make it more affordable. Im just a useless lump right now

Thanks for reading this far..
Theresa

earthspirit

im in only the early days with RA medication so i cant give much advice.

i know the pain though and i keep saying it - damp cold cloths round the joints for a little bit of release.

i also know that stress makes it all worse and you are stressed big time. please try to find a little space to chill out and get your head mess sorted a bit.

i dont do cyber hugs (dont touch me im in pain) but i with you in spirit hoping there is some breath of fresh air with your treatment and a bit of relief from somewhere. i think you need to stop worrying about childminding for your daughter and hope she fully understands your own great terrible situations.maybe if you get the disease under some control you can maybe help with kids in the future. it isnt your concern though right now.

focus on yourself!!!

theresa4

thankyou earth spirit for your kind words

Damp cloths dont help me unfortunately, heated wheat bags give me a little relief but it short lived as is hot bath relief.
Im generally alot better with my stress levels but I do get so frustrated and angry when Im in limbo like now with treatment and much as I dont want to worry about might be's its hard not to think ahead of a bleak future if I dont manage to get this medication into my system.

As for my daughter she happy shes back at work, and understands fully my limitations but I wanted to do more and Im a petulant child right now stamping my feet shouting it isnt fair :oops: Im a young Grandma I should be able to enjoy my time with my granddaughter yet I can do less than MY grandma.

And to top it al my new ESA form has just dropped in OH joy so I now have to fill that in too.
Im off to see my GP this morning for a chat about it then my hubby is dropping me at the hairdresssers this afternoon for much needed grey coverage and a chill out.

Theresa

barbara12

Oh theresa4 I really do feel for you, this is awful to find something thats works so well then for it to be taken away.
I have everything crossed for you that they get the rash under control, and start the meds again .
You are not a useless lump you are suffering, and when they get this pain in hand you will be able to help your daughter again....
I so wish I could help more
You take care ((((((())))) and please let us know how you get on xx

valval

i have no experiance of these drugs so can offer no help but i do understand the exhaustion and pain and just a few days with out must be great sorry they did not last long the rash must be awfull we are here if you want to let off steam.
you are there to listen to your daughter and you give her suport in so many ways please do not get upset, because i know she loves you for who you are and would love to have you fit and well but not to baby sit just because it must be so hard for her to see you going through this.
i know this is a low blip for you and your strenth will carry you through we do rely on others so much to decide what they will do for us it if frustrating it would be lovely to have loads of money and go private where they could try what ever might be best no money worries but saying that the n h s does great things for us they help we get is so much better than lots of other countrys good luck ((())) val

skezier

H Theresa,

Good to see you again but sorry things are still not so good.

I think you do need to stop worrying so much. I know what its like to be sidelined and have no hope of further treatment except pain relief and maybe a bit of physio here and there but it may not happen.

You have done so much for your grand kids your bound to feel guilty but you mustn't and your daughter will understand. Well done on her for getting the job by the way and also your right it does help with self esteem.

Theresa you are not a useless lump! Now say it to your self for a min and know your not.

The bone shift is evil and messes with us in so many ways. Physically, mentally and emotionally. You have been on a roller-coaster fro so long it is no wonder your feeling like you are.

I wonder if a AC challenge pain/arthritis could help you? They teach you technics that you may not know re dealing with the frustration (in my case its fear that gets me) and coping with the pain, restraints etc. You can look at 'in my area' up top of the page and maybe see if they have any that your could get to? It might help.

There is also (I think its called but became brain dead about 6 hours ago ) expert patient and tun by the NHS.

I am being sent to someone to council me to learn or try to learn my limitations. I don't get frustrated I just charge at it head down and antagonise the bones so much the take me down literally now a days.

Its being done through the pain clinic for me but it might help? I'v yet to find out and think i might never really learn not to do this.

Maybe a chat to the helplines as well might help?

I am shattered and the eyes are blurred up badly but think I read your worrying over things that as yet might not happen. You never know hat they might come up with flower and I know what its like to be chucked on palliative care and lose hope of treatment but since I have been the care has improved so there are some compensations .... its still horrible when they do it.

What ever happens you will deal my friend. You have come through so much the last 12 months and you area lot stronger than you think. Hang in there and leaving hopes they will hurry up and make some decisions to help you very soon. ((((( ))))) and a magic cuppa. Cris xx

dreamdaisy

The biologics etc are very powerful meds and are cheerfully presented as the 'golden bullet' for auto-immune arthritics. They're not. They are 'poisons' in their own right and they can take a huge toll on the body, as you haved continually found. They don't suit everyone (and if they do work they don't last for ever) I think they are still quite a grey area in rheumatic meds, they can work and do work but not that well for many.

There are a few on here who are 'living the life of Riley' thanks to their anti-TNF treatment so we no longer hear from them but for those of us taking them without that benefit, well, we're still here, still trying to fly the flag with enthusiasm but ye gods that's tough from time to time. When my humira begins to fail (and it will, I cannot see any point in pretending otherwise) then I will be in the same boat as you. No more fancy expensive stuff for yours truly and in a way I'm relieved. I have no idea what will happen in the future, none of us do, but I am sure I will muddle through with the help of myself, my husband and the forum. Many of us on here muddle through, you won't be alone. DD

earthspirit

ive only been 3 weeks on sulfasalazine and feel so ill its unreal.
immune system has been floored and ive got this awful head cold. i actually havent been ill for years and years and years.

i dont know if i will even consider the path of many medications as the risks are way to high for me. they do work for some, but this forum, like the multititudes of others i have been on, are full of people who appear to becoming more ill with meds.

im also on forums where people are going a far more natural route with complete lifestyle changes and food elimination and really have to say they appear to cope much better.

YOU are not whining at all, but i can understand how your spirit is being torn apart by all thats meant to help you.

maybe with the warmer weather and a chance to control your diet, free from RA meds will give you a break. taking pain meds that do control some pain has got to be easier on your system than what you have been suffering. hopefully you may find your doctors supporting you with this.