Every decision appears to be a bad one - RA v. Meds

Starburst

I'm afraid this is likely to be a ramble but I'll try to keep it succinct.

I'm nearly 4 years since diagnosis and the promises of "we caught it early, so the outcome should be good" and "the medications these days can get you into remission" appear to have been broken. The immunosuppressive nature of every medication I've tried has caused me issues - mouth ulcers, stomach bugs, infections and repeated bouts of horrendous thrush. The latter has caused no end of pain, discomfort, doctor's appts and just generally, utter humiliation at the lack of dignity of it all . I've seen a specialist who said it's from being immunosuppressed. Changing meds has not made any difference, it's just 'one of those things' apparently.

An infection over the weekend led my GP to prescribe me high dose antibiotics which has led to another bout of thrush despite taking the preventative treatment. I came home this afternoon feeling so distressed and tearful, that I took all my injections out of the fridge and threw them into the bin. A few seconds later, I regained some sense and got them out again. This may seem irrational but because I choose to take this medication, I feel as though I am choosing these side effects and thus, I am responsible for the way I am feeling.

The alternative to being on treatment, I know, is not good. My RA is aggressive and I know that when it's uncontrolled I feel poorly and risk joint damage. I don't want to come off my meds and then look back in a few years time and be furious at myself for making an emotion-fuelled decision. It seems that either way, I am going to be suffering with some sort of symptoms and I'm desperately trying to choose the path of least suffering but I don't know where to turn. It's tricky because it appears not to be the medications themselves that cause the problems but that I get quite unwell when my immune system is suppressed.

I feel desperately sad about all of this. I have so many exciting things going on in my life. Finally, I am secure in myself and hand-on-heart honestly happy but RA is meddling and making things less secure.

Kittkat

Hello starburst
I am sorry to hear about this. I myself am at the start of the meds journey and so far it aint that great. What a tricky decision to make. My dad had severe chronic ulcerative colitis and tried all the meds ( some that we take). He once had a week of no food +intravenous steroids. In the end he just gave up on the lot of meds ( literally binned them) and he recovered and hasn't had an attack for years+years. Basically the moral of the story is don't give up/have faith. He also had counselling after that he said he felt brilliant. Have you had any counselling?You should not blame yourself for taking meds in order to make yourself better. That isn't your fault.
I am not saying ditch the meds because frankly that is something for you +doctor to decide. I just hope there is some kind of alternative treatment/ least bad treatment that they can come up with for you.If you do have a break from the meds I have seen other people who have come off the meds due to health reasons and the arthritis has calmed down the body works in strange ways.
Anyway take care x

Toots

I have nothing sensible to offer you Starburst, but when in this position I will happily send hugs galore. It's a roundabout nightmare for you Hugs x

DebbieT

Oh Starburst I feel for you, I really do (((((hugs)))))

Is there anything thats been suggested that could bolster ure immune system while ure on these meds? It seems silly that we have these amazing meds to help such a potentially crippling disease & the lowered immunity is causing you such massive problems

I wish I had wise words for you but I don't. I know the downside of mtx caused many chest infections so high dose antibiotics then thrush for me & that was only over 3 months, it was exhausting!! Of course I've been off of it for over 3 months now & I'm in a right state My skin is incredibly unstable & my PsA is running riot. I'm due to start a total immune suppressant tomorrow but it will treat my skin only!!! I have NOTHING & no help as yet from the Rheumy :?

Has ure GP or Rheumatologist had nothing to offer?? Multivitamins, fresh fruit & vegetables, live yogurts daily etc or even easier a tablet that gives you some immunity

Big hugs (((( )))) xxx

phoenixoxo

Hi Starburst,

I'm sorry you're having such a tough time. Please don't blame yourself for taking the meds that give you the side effects. It's natural to feel anger and sadness and a lot of frustration about things, but blame needn't have a role here

I must admit, the problems I've had with meds have made me pretty low at times. All I can do is tell myself to keep moving forwards and hope that the next drug will work out for me. On that note, I'm a bit surprised that the specialist you mention seems inclined to group all immunosuppressant meds under one hat, so to speak. If you don't mind my asking, which meds have you tried so far? (I won't take offence if you'd rather not answer.) I just have a feeling that the situation isn't as hopeless as it seems

Best wishes,
Phee

Nishjoshiuk

Hi and totally feel for you. I think it is having know control on what our body does to us when suffering with RA but from my own experience and many years ago I tried the non Med route realised that I have to have the meds as the suffering was just to much.
Like you the worry of my joints getting worse was on the back of my mind and I have tried every drug possible over the last 20 years and suffered many side affects but something must have worked as they said I would be in a wheel chair 10 years after being diagnosed and I'm not!
There are a lot of drugs on the market and the anti tnf ones seem to work with me with very little side affects I did fight for this drug as aware how expensive this is but why should I not have the best as I am a youngish mother of 2! Thankfully I have a great GP and Specialist who listened.
I'm now going to be trying my second anti tnf as the first one run its course but I determined this will work! I'm putting all my faith in it again as like your self I lost hope and thought what's the point. But I can't afford to think like that I have to many people that need me right now.
Keep fighting love and push for the drug that suits you. Keep strong and find away to manage the pain best you can.xx

dibdab

Hi Starburst,

I've nothing to suggest I'm sad to say, just wanted to add some sympathy and understanding. I know that the day after meth each week I ask myself repeatedly why I'm doing this to myself(feel rubbish and fairly tied to the bathroom ). But on the other hand I can't face what my joints might be like without the meds- it's such a tough decision and one that we can only take for ourselves.

Really hope you get some relief very soon. Big hugs (((((((((((( ))))))))))).
Deb x

Starburst

Thank you all for your kind words and helpful advice. I must admit, I did shed a tear or two as I was so touched that you've taken the time to read that all and give me advice.

I'm feeling very under the weather and it's been a long week for me. I've been only working 4 days a week since May and I've always been on my knees by Friday, so trying to sit through hours of lectures was interesting! I have had therapy on and off since I was a child and I've been having a break but I think I might go a see a previous therapist for a short while.

Phee - of course I don't mind, I've tried sulfasalazine, MTX, lefluonomide, hydroxy and I'm on my first anti-TNF cimzia. I've had a tendency to thrush on steroids too. I do feel that cimzia is not agreeing with me anyway to be honest. I've only had thrush since starting MTX but it has given me relief symptom wise, so again, it's trying to weigh up the pros and cons.

I am considering other options, perhaps seeing a herbal doctor and trying some supplements. I had one recommended but it's pricey and money is tight, I may have to suck it up and forgo something else though. Rheumy did say that she'll wean me off a DMARD or two if the cimzia starts working, so perhaps a dose reduction of something will help. Right now I'm on leflunomide (10mg), injected MTX (20mg) and have been on the loading doses of cimzia, so it's a fair amount!

Ok that was long. I'm going for a lie down but I'll try to catch up with forum posts over the weekend. Have a good one, you lovely people! x

stickywicket

Sophie, I'm sorry. I don't know how I've managed to miss this thread but I have. I really don't know what to say now I've found it. Everyone who has read your past threads must be deeply impressed by the courage and determination with which you've faced not just your arthritis but also your studies, work and sometimes other family health problems.

I think the idea of counselling might be a good one. Just having a sympathetic ear to hand might make all the difference between being able to cope and not being able to.

I make no bones about saying I think the herbal route is a bad one. Some herbal supplements can interact badly with our prescribed meds. Also they are not regulated as pres ription meds are so quantities can vary a lot. Please have a word with your rheumatologist before embarking on this course of action.

I hope you can manage a reasonable weekend. Take care.

phoenixoxo

Hi Starburst,

Thanks for responding, especially when you're feeling so poorly! That's quite a list of meds there, and I see you're on three types at the moment; so if none of these is agreeing with you, it's not surprising you're under the weather :?

Returning to therapy sounds great, a really positive step. I had a few sessions a few years ago and I found that talking through everything helped me to sort through my thoughts and see a brighter path ahead. As to the herbal approach, this isn't something I've tried so I'm sorry I can't be of any use here. I agree with s/w that it's a good idea to have a chat with your rheumatologist about this, just to be on the safe side

Best wishes,
Phee

dreamdaisy

For some of us every decision is a bad one. I've been there, done that, tried this, injected that, swallowed the other and not once has any promise made by the medicos been fulfilled. My rheumatologist once described me as being treatment-resistant which stung a little but I reckon is true.

Like the others I laud your courage and determination not to let this beast beat you but maybe, just maybe, it could be time for a break from it all. I have had the occasional spell of not taking any meds (not always with the support of my rheumatologist) but they have shown me that, despite my not feeling much in the way of benefit, there is actually something positive going on. I have learned to lower my expectations to an indecently low level but with your being so much younger that cannot be acceptable.

I have no words of comfort but I respect your approach to things and your willingness to fight on. ((((())))) DD

trepolpen

hi Starburst ,

your not alone out there , there are alot of us that our RA never been under control , but it still about protecting your joint until the time they have a good treatment for it , maybe look at changing the bio , there are several new ones out there & maybe add another DMARD

I agree with sticky , some of herbs dont go with our drugs & you need to talk to your nurse first , Acceptance of our lot is hard at times & maybe ask about some Cognitive Behavioural Therapy , & NRAS recommends it for RA , be very careful what you read even in the press & saying magic cures , there is non for us , it will get a lot easier in time

Starburst

Thank you again for your words.

I don't know why but the notion that herbal meds may interact with my other meds just didn't occur to me. :roll: I am looking into other sorts of therapies. I'm not a big fan of alternative/complimentary therapies but I'd consider something like massage therapy as long as the person has a medical(ish) background.

I think a short course of CBT would do the trick. I've had years of "tell me about your childhood" but I really don't need or want any more of that. I am mentally well, just reacting to the difficulties that RA brings, if that makes sense? My psychiatrist agrees and will be discharging me back to my GP which is a huge step for me and one I am very proud of. I don't need that sort of medicalised psychiatric treatment, just some support in getting through the bad days that RA brings.

I'm treating myself tonight; nachos and olives! OK, sp they're not on my new healthy eating plan but still, a girl's allowed to enjoy herself occasionally, right? Strictly and X Factor in my PJs - such a party animal.

I know I will be alright. I know I can get through this. I'm just having a wobble but I can cope with this. I've dealt with far worse! I have lots of people who are supporting me (all of you included, of course!) and I am so grateful.

dibdab

With you on the PJ's, strictly and X factor- party animals both :? . Planning on sausage and chips though- childhood comfort food.

Hope tonight is a peaceful one and tomorrow a positive one.

Deb xx

frogmorton

Oh Sophie

I just read this from beginning to end...

BIG sigh.....

All I can say is enjoy your olives and nachos and that I send you some ((())) and wish you strength to hang on in there :? .

also 'its' not fair' springs to mind

Love

Toni xxx

stickywicket

I hope the olives, nachos, PJs and TV helped. ((()))

Mat48

Oh I really do feel like giving you a big hug - I so relate to every word you have uttered in this thread Sophie.

My sister has had mouth ulcers for 3 months now and had a wisdom tooth removed into the first month - which has obviously compounded the problem a lot. She doesn't have RA or any other underlying health conditions that we know of but she is profoundly deaf and so I've been trying to help her get to the bottom of this horrible state of mouth for her at a distance (she lives and works full time in London). She has just had blood tests for diabetes, Sjogrens (ANA) and Rheumatoid Factor. In return for emailing her GP on her behalf she sent me pics of Manuka honey, live yoghourt and a lovely one of her tongue - bless!

She comes up here in ten days for the first time in years and I'm really trying to get my act together on the depression/ RA front now so that I can devote myself to cheering her up. I too have tried Sulfa, Hydroxy and spent 18 months on Methotrexate in both oral and injectable form. I've now been off RA meds for 9 weeks and have just had to succumb to a high dose Prednisolone. I have spent the past month on an emotional and psychological rollercoaster - which culminated in me going to see a podiatrist last week after having private blood tests (all our precious holiday money now gone!) to check for vitamin D, thyroid antibodies (I have Hashimoto's hypothyroidism), test for gluten intolerance, Calcium, Folate and a more specific one for B12 than my GPs were prepared to take. So far I've discovered I'm vitamin D deficient (at 28 when should be over 50) and gluten intolerant - which I sort of knew but wanted it confirmed. Everyone including my GP and the Podiatrist keep telling me to accept I have RA and blame everything on it but I've just got a horribly inquiring nature. I've booked myself into a first accupuncture session with a woman who studied in China for years and is very clever and supposedly a natural healer. She does it for a small fee and was very nice to speak to on the phone so I'm trying to overcome my scepticism now. It's not like taking herbs at least and it might help so nothing to lose I feel.

The podiatrist told me that my toe pads (MTCs) are badly inflamed from RA and the rest of my feet and achilles tendons are all suffering from inflammation too. He looked at me in the eye as I clutched my arms and said "you need those drugs again for your RA and you need them now - you are very ill woman!" which really brought things home to me as nothing else really has?

So I'm to see him again in a few weeks on his NHS list having promised him I would get some oral steroids off the GP. I think it's a case of damned either way. I thought I could bear the general pain and even the icy cold numbness in my legs but I realised when he said this that I just can't. 2 days into Prednisolone now and the cold wet legs are still a huge issue. My GP has referred me for CBT with a counselor but I know I won't get to actually see one for ages.

It's all so horrible but, like you, I know that it's all down to RA and not down to me. My life is going really well apart from all this rubbish. The word "choice" doesn't really come into it - it's all about impossibly difficult decisions I feel. Mat xx

trepolpen

Hi Mat , tell your sister to try folic acid & Manuka honey which should help her mouth ulcers , I am on 25mg MTX but did not have any problems until started new biologic earlier this year but it clears it up within couple of weeks

you should be careful taking Prednisolone , low dose is ok but your doctors are right & you need to be back on your meds , there is no magic cure for us now & you need to protect your joints , thought 18 years ago when I started with RA would end up in a wheelchair but these drugs work & you dont need to end up there

good luck with the accupuncture , for me it worked but only lasted a few days , but hope it works better for you

dreamdaisy

Hello Starburst, I hope things are better for you today, I really do. We are on for the long haul with this disease and we all need time out every now and again to sulk, rant and just stop fighting the world. DD