Advice, opinion or a bit of a rant!

staceyh

Hi looking for advice or opinions if anyone could offer it, find it difficult to get advice from people who dont really understand.

I am currently on 15mg methotrexate (reduced from 17.5 because of sickness) and 50mg enbrel injection weekly along with the folic acid painkillers etc. I am beginning to question if the drugs are worth the side effects and possible risks that come with them especially the methotrexate and enbrel, I started enbrel at the beginning July and although they have helped the level of constant day to day pain I still have flare ups and bad days as before.
Now though I feel like half the time I'm walking around like a zombie have a constant cold (which I then pass onto every other member of the house) catch every bug doing the rounds and feel sick 5 days out of 7!
I'm also worried about the potential risks of enbrel and wondering if it is really worth it - worried about voicing this to my rheumatologist as lets just say she isn't a people person and feel if I say anything after getting the funding for enbrel that they will want to just wash their hands of me.

Really sorry for such a long post this is just really getting on top of me and stressing me out!!
Any opinions or even just confirmation that I am not alone in feeling like this would be so helpful

mouseymousey

Hello Stacey, Sorry its not going so well, you caught me at the end of a rotten day too. I think it basically boils down to having no 'cure' for Arthritis? All the meds can do is to ease the symptoms?
Self OA & RA & going downhill badly at the mo. I had an attempt at surgery which for various reasons failed. I saw my GP who issues Co-Dy & Diclofenac, thats it. I want to ask - is that it, is that all you have? But, I sort of think it is? I read of others taking this and that and never get offered anything else. I'm not happy taking the drugs either, and woud probably not want anything stronger. I had anti-d's until about October and weaned myself off them (its all subjective) as all I seemed to do is sleep. So, Sorry no answers, all I can think to say is you have to try to work out what is best for you.

tamnwill

Hi there, sorry to read you are having such a bad time of it...........just wondering if the cold and sickness bugs are rife out there at the mo anyway, I know they have certainly done the rounds my neck of the woods. I too was taking Meth' 20mgs (for 3 months tho) and felt i was in a worse place! they wanted me to go up to 20mgs as my inflammation blood results were through the roof but I said that if i wasn't showing signs of it helping at 20 what was the point? It also made me feel 'helpless' and very low, but that subjective as I had 2 lots of the cold/flu bug and the stomach bug too in the last 2 months of taking it, so I could have been rough anyway..........they decide to take me off it and try something else! The consultant said 'sometimes Meth' can change the chemicals in the brain too, and as I was reporting feeling desperately down, he wanted to prescribe something else'.
All I can say is, try and be verbally demonstrative in a reasonable but very strong way when you speak to the R' nurse and ask her to speak with your consultant on your behalf about your concerns. Write it down before hand, feelings/symptoms/concerns/fears etc and repeat them to her..............Try to think of her as a way to get info to an from your consultant, that way her lack of people skills won't affect you potentially. Failing that, ask her for your consultants email addi and send your concerns to him. They HAVE to respond if it's been sent!!!!!! It's amazing what a difference it makes to take this line of action in a passive concise way, as they fear the red tape!!! I'm sure you can be offered alternatives or at least better explanations as to their train of thought............
I'm sure I am regarded as a total pain in the **** by mine.........but I console myself that my pain is far worse!!!! Be strong, and go for it.......I promise you won't get turned away.........they will do their best to help..........they are simply used to patients 'accepting' generally and not asking questions etc...........times have to change..........we are ALL worth it!!!! Love and gentle hugs ( without bugs) lol, Tam xx Let us know how it goes?




for

staceyh wrote:

Hi looking for advice or opinions if anyone could offer it, find it difficult to get advice from people who dont really understand.

I am currently on 15mg methotrexate (reduced from 17.5 because of sickness) and 50mg enbrel injection weekly along with the folic acid painkillers etc. I am beginning to question if the drugs are worth the side effects and possible risks that come with them especially the methotrexate and enbrel, I started enbrel at the beginning July and although they have helped the level of constant day to day pain I still have flare ups and bad days as before.
Now though I feel like half the time I'm walking around like a zombie have a constant cold (which I then pass onto every other member of the house) catch every bug doing the rounds and feel sick 5 days out of 7!
I'm also worried about the potential risks of enbrel and wondering if it is really worth it - worried about voicing this to my rheumatologist as lets just say she isn't a people person and feel if I say anything after getting the funding for enbrel that they will want to just wash their hands of me.

Really sorry for such a long post this is just really getting on top of me and stressing me out!!
Any opinions or even just confirmation that I am not alone in feeling like this would be so helpful

staceyh

Thank you for your replies they have really helped, I have an appointment with rheumatologist on the 9th Feb so will just build up the courage to speak to her then, I know that at this time of year there are a lot of bugs doing the rounds but I honestly feel like Ive had the cold almost constantly for the last year (since starting meth) it isnt always a really bad cold but its always there to some degree.

I just worry about the long term effects of enbrel and meth and worry about becoming too dependent on them I am 25 and dont know what they are going to do to me in say 10 or 15 years and obviously I am worried (whether rationally or irrationally) that it may have some effect on me having more children.

Again thanks for your advice it really helps

airwave

Hi,
I'm in a similar position with OA, the Naproxen (nsaids) sends me to sleep and doesn't work in any case, the Paracetomol doesn't really touch the sides, the other painkiller and anti inflamatory I'm not supposed to take to often, so, as MouseyMousey says, "what next?" I sat and wrote about the pain, describing it and how it affects me, I try and put it in a box and push it aside but then it changes so much. One day I can walk round town without too much pain, the next I can't get up the driveway, later that day it changes again.

I describe the pain as transient, I have major probs with my shoulders and then my ankles hurt more and I have probs shuffling round the house, next day its my hip or toes or hands, this goes on all the time. Tomorrow it'll most likely be my knees and then my shoulders again. Can we really take pills to cope with all this? OA's don't have rheumies just a gp to mentor us.

Those near to us can't even begin to know what we are feeling and sometimes I think they shouldn't know, it only clogs up their minds with our feelings, they need to be free of our pain, I wouldn't want them to feel it as well. So, where do we go from here? Well, grin and bear it I suppose?


8) Its a grin-honest.

P.S. a good oldfashioned rant does work! Well it made me smile at the load of old b@£$£%ks I have written!

kazpaz

Hi all.

I was just going to write a new post about enbrel but then found this.

I have RA and a lupus overlap. I am on mtx, have been on 25mg for 2 years, but was recently reduced to 15mg, as I was starting enbrel. I was in reasonably good shape when I started and almost a month down the line I am in a bad flare and feel dreadful. Spoke to my rheumy today and he said enbrel usually helps RA but can make lupus flare, sometimes badly and often if enbrel does, humira will too. He has advised me to bash on for a few more weeks and I will, but feel totally deflated tonight. This was the last hope to stop the damage which is widespread. The mtx and sulfa haven't done enough.

I sympathise about the drugs. Are they worth feeling awful for???

Kaz

colinone

staceyh wrote:

Hi looking for advice or opinions if anyone could offer it, find it difficult to get advice from people who dont really understand.

I am currently on 15mg methotrexate (reduced from 17.5 because of sickness) and 50mg enbrel injection weekly along with the folic acid painkillers etc. I am beginning to question if the drugs are worth the side effects and possible risks that come with them especially the methotrexate and enbrel, I started enbrel at the beginning July and although they have helped the level of constant day to day pain I still have flare ups and bad days as before.
Now though I feel like half the time I'm walking around like a zombie have a constant cold (which I then pass onto every other member of the house) catch every bug doing the rounds and feel sick 5 days out of 7!
I'm also worried about the potential risks of enbrel and wondering if it is really worth it - worried about voicing this to my rheumatologist as lets just say she isn't a people person and feel if I say anything after getting the funding for enbrel that they will want to just wash their hands of me.

Really sorry for such a long post this is just really getting on top of me and stressing me out!!
Any opinions or even just confirmation that I am not alone in feeling like this would be so helpful

Hi Stacey, YOU ARE NOT ALONE i feel so sorry for you I am on 20mg methotrexate injection and 50mg of the embrel also prednislone steroid along with all the other stuff. All i can say is that if you feel anything like me you must be in a dark place. I have reached the can't cope stage and come out of it been in and out of hospital to try and get the arthritis stable by the way its RA and PA nothing seems to work and i feel so ill. I started Mxt 3 years ago and it did work for a short while been on the enbrel now for only 12 weeks and had some bad reaction in my thighs to the injections. My main problem is that i feel so ill most of the time and still suffering the pain of the arthritis. I would not mind the sickness if i was out of pain and i still get the flair ups. Its good advice to write down what you want to say to your rheumy and give it to her to read in letter form when you go for your appointment. I have an advantage my Rheumy is great and spent so much time with me explaining things and every test under the sun. I to worry about the future and the effects of the drugs methotrexate is like the drug from hell for me and yet some people cope ok with it. My daughter has lupus and i worry about her so much. My heart goes out to people of your age
Stacey i could go on and on but i wont PM or mail me if you want and i will reply. All i can tell you is we are not alone and dispite how bad you feel you must try to get yourself out of it and find some way of perking yourself up i know you are depressed and i know how hard it is to get out of it. its not your mind its all the drugs, Pick yourself up dust yourself down girl, put a smile on your face and tell yourself you can cope, wont be long before you see the rheumy and i'm sure you will feel better soon. I'm going out tonight i feel like SH-T but i'm going out. Take care Stacey and keep your chin up
i'll be thinking of you.
Colin

staceyh

Thanks again for all the replies especially colin, really really helped and feeling able to think seriously about it all, speak to my husband and hopefully come up with a decision about the future and these damn meds!!

poppy30

Just wanted to echo what the others have said about you not being alone. Really hope you are able to speak openly and honestly to your rheumy at your next appointment. I always write a few bullet points down and take the list with me which helps me make sure I say everything I want to... (before I did this I was always kicking myself after the appointments for not getting everything off my chest! :x :x :x )
I was taking 15mg Mtx and Humira for two years and stopped all meds in Sept in order ot try to start a family. I also experienced the frequent colds whilst on the meds and questioned whether or not they were good for me in the long term so I quite looked forward to giving my body a break from the drugs. Unfortunately, I am struggling sooooo much without them now with much pain and swollen joints and I'm wishing I was back on the meds regardless of side effects!!!!!!
The medication decision is a tough one to make and it is important that you get all the support you need. Sending you (gentle) hugs!

Poppy x

maddyc

Hi Staceyh

Just also wanted to say you are not alone, but also do speak to your rheumy about side effects. I was on 20mg methotrexate and enbrel originally, suffered horrible nausea and extreme fatique (over and above RA fatigue!) from the methotrexate. I would take it on Sunday night and be dry retching (sorry if tmi) into the sink on Monday and be nauseous for days. I know how you feel. I suffered for months before I plucked up the courage to be really open about the effects.

To my surprise I was offered an alternative DMARD (Arava) which I took for three months. I had side effects with that too. Now I am only on a biological drug - Humira - which I take weekly. Enbrel had stopped working for me. I too have repeated infections - in my case sinusitis - which means I have to stop/start my treatment, but at least I don't have the other side effects any more and can't believe I lived with them for so long (again out of fear of speaking up!).

I think most of us on these new medications do worry about long term side effects. For me, having thought long and hard, I know that untreated RA is also pretty unpalatable. At least for now, apart from bad days/weeks, I can do the school run, strap my toddler into his car seat, chop carrots and generally live a reasonably 'normal' life (apart from the incessant necessity to nap!).

Sorry that this is so long, I don't have time to edit it but really wanted to respond. Do PM me anytime.

Maddy

staceyh

Hi thanks again for advice just wondering those on enbrel are the majority still on the meth too? I know they say it works best with the meth but just wondering if anyone has continued with the enbrel and stopped the methotrexate? Just considering this as an option as I'm sure this is what causes the majority of the sickness

Thanks again