Confused

Hi All

Just something I can't get my head round please. I have been on 3 DMARDS none of which suited. I have been offered abatacept which I am most certainly going to have to start shortly despite my reluctance to do so.

My question is this: We take these drugs to manage our RA but then have to take other drugs to counter the side effects which in turn lead to others severe illnesses. I have read your posts over the last couple of years and note that most of us are still struggling (some with additional complications) despite adhering religiously to conventional treatment.

I am so afraid of adding additional complications to my RA by taking conventional RA treatments that I just don't know what to do.

I note biologics reduce bone formation for example, so anyone with osteoporosis is going to have additional problems with their bones. Then there is the cancer risk and a whole load of others associated with the biologics.

Is there anyone in the community who can allay my fears and help me understand please?

Thank you.

Sending lots of hugs 😘

25 Replies

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  • I was diagnosed in2013 still having failed treatment and my rheumatologist has given me 6months break from treatment due to my reluctance to go back on tablets that made me very poorly she sent my for a course of psychiatric counciling much to the disbelief of the psychiatrist who said my logic to the situation was reasonable the solution has yet to be sorted

  • Wow! Where do we go from here Junebee?

    I was meant to start Abatacept in May but for some reason the hospital and Bupa at Home couldn't get their act together despite my chasing both so after 4 months of chasing I gave up and currently on nothing except paracetamol or Lodine a couple of times a week.

    Will be interested to see how you get. Please keep in touch

    Misty x

  • I will keep you posted I as on pain control only now but I don't feel as poorly it Scarry isn't it!

  • It is logical to be concerned about these drugs. But it's also logical to be concerned about leaving the disease uncontrolled. Left alone, RA can cause heart, lung and other internal problems - many of which you may not be aware of until too late. It the days before these drugs many people died fairly young if you had aggressive RA. So we are stuck between the devil & deep blue sea, and each have to make the choice that feels right for us.

    Personally I have no side effects from the three DMARDs I take, and since I am well monitored I feel reasonably confident that there are no problems developing. And the great benefit to me of taking the drugs is that my RA is controlled to the extent that I can exercise, work, and do other things that help keep me happy and healthy. I tried using diet which did nothing for the RA but did help me lose weight. So, all in all, I'm actually now fitter than I was before the RA hit me. So even if the drugs have risks, all the things that the drugs allow me to do reduce my risk of cancer, heart & lung disease and so on - so I reckon that the end result is that my risks are no different from anyone else.

    For me, living with uncontrolled RA was so awful that I'd now bite anyone who tried to take the drugs away from me. But it's a personal choice.

  • That's reassuring Helix! Thank you. It really is a case being stuck 'between the devil and the deep blue sea'.

  • I wasn't aware that biologics reduce bone formation. Which is not to say that it's untrue, it's just not something I've heard about. I belong to another forum too and given the vast numbers of people on biologics, I'd expect to have seen at least some posts about biologic-induced osteoporosis, but I haven't. Do you currently have osteoporosis Mistydawn?

    As for the cancer risk, again I'd be cautious about taking that as a given. The source of information is all-important. Some 'studies' do not have much credibility within the scientific community, or so I hear, yet they'll be out there on the internet, looking for all the world like indisputable fact. I think the kind of cancers that biologics are most likely to encourage are skin cancers. Not something anybody wants, but I think in general we're talking about the more easily cured types. I'm very carefully saying 'I think' because you'd do well to double / triple check everything you hear until you're satisfied one way or another. In fact just keep checking using the best sources possible. Your rheumy may be first amongst those sources.

    One thing I am very sure about is that all drugs have side effects, even caffeine, even aspirin, and even water will kill you if you drink a massive amount. The internet can be a brilliant whistle-blower about some real dangers, but it also hypes up the risk of pretty much everything.

    Where you go with treatment is your call, of course. But I'd say that I've had almost no side after nearly 3 years on Humira. Twice my neutrophils have been slightly down, that's all. But not by a clinically significant degree and only for a couple of weeks. By contrast I have felt as if my PsA was killing me. Rampant inflammation is really very bad for people. Good luck with whatever you decide.

  • Apparently there are different types of RA Biologics re cancer. When I was being assessed for them I said I'd prefer injections to infusions which I felt would be more controllable .....no prolonged hospital visits for a start...but as I'd had both breast cancer (before any RA drugs) & a bcc I was told that I wasn't a suitable candidate & was put on infusions.

    I was first diagnosed with RA in 1999 & scans now show I have very little joint damage......due I'm sure to the fact I have been very lucky to have had rheumatologists (3) who hit me with drugs from Day one .....some brilliant some dreadful, but I'm still here walking & talking....I hate to think how I would be had I been diagnosed back in the 1970's.....or if I had refused the drugs I have taken.

    Obviously it's a personal choice but I am happy with my outcome having taken the drugs I was offered.

  • Thank you Postle2. Apologies but what I read was 'biologics slow down bone formation' not 'reduce' it.

    Sadly, yes I do have osteoporosis of the lumbar spine. I guess I am thinking too much about what 'might' happen in the future rather than living for today.

    Thank you for your input 😊

  • Misty, just thinking ..... can't RA cause Osteoporosis? My GP was going to send me for a bone density scan until he realised that PsA & RA are different in this respect. The way he put it was that RA can lead to Osteoporosis but PsA doesn't.

  • Yes, a DEXA scan was carried out once I was diagnosed with RA. It's just the thought of adding something else (biologic) which can further slow down bone formation which concerns me Postle2

  • Hiya U. I think there are many potential problems with most all the meds we need to take in order to function better, you know that as well as any of us, it's 'just' weighing up the which have potential (yes, that word again!) & which will give us least add-on problems, it's not an easy or a jump in with both feet thing (can't think of the word I want!!). It's a difficult one knowing yours & your familial history but maybe your Rheumy is the one to ask in this instance, only because he should be aware of the reasons why you're concerned & work with you on this I think, it's a valid issue & one I would also discuss with my Rheumy so I'm not suggesting anything I wouldn't do myself. I don't know which sites you've been researching on but if you haven't ventured to the US ones this may be interesting reading arthritis.org/about-arthrit... it's one of the ones I'd bookmarked when I've been researching.

    Speak soon. x

  • Thank you P. Hope you abc your hubby are well. Interesting article - thank you!

    Have appointment with my consultant on 10 November when I he will start md on a biologic probably abatacept. I will go to appointment prepared with my concerns.

    We'll catch up soon x

  • I have also been reading the posts since last Dec. to learn about the effects of the agressive treatment protocol offrered to everyone diagnosed with RA. There are so many different forms of RA but this differential diagnosis is seldom done and there is just an assumption that the protocol would work for everyone. What I have seen is not the case. So many have been on DMRDs for years not finding the right combination. They have pain, erosion and flares and side effects to grapple with, often finding only real relief from pred that still is being used long term with many patients inspite of the warnings from from EULAR . I do not understand why they continue with the meds. Are they really slowing down the disease when you are still suffering so much? How do the doctors determine that the meds in these cases have efficacy? I seem to have noticed that RA negative patients have more trouble finding a combo that works and that they more often than RA possitive react with adverse effects on MTX.

    The biologics that are selective in blocking the inflamatory agents usually have less side effects and most patients really have felt they are life savers. The down side as you said is the severity of eventual adverse effects that can be irreversable. There is also no dependable research on long term effects.

    The RA patient is in a very difficult situation when diagnosed since they are seldom helped with seeing and understanding the whole picture and offered only one line of treatment. Science and research are going forward with big steps on the field of AI diseases and there is an abundence of alternative ways to eather combine with meds or without meds to decrease and control inflammation. Nameing AIP elimmination diet, LDN and stem cell therapy in combination with right supplements have shown to have very possitive results.

    The RA patient is left to do her own research, finding doctors that can supply more information about alternatives and finding research and studies on her own when sick and suffering stressed out and anxious, and this is not fair and is a big stress factor that the suffering patient could do without.

  • Wow, Simba! You seem to totally be of the same view as me. I am continually researching and not giving up on alternative/complementary therapies but I am now under pressure from my consultant. He says he understands my need to try alternative complimentary therapies but he feels that I should now be combining these with the conventional therapies.

    They talk about trying out conventional DMARD's and biologics but I feel unless one of these is effective immediately there can be many that the patient needs to trial before they find one effective for them in which case they have lost time with the RA not being controlled in the meantime not to mention the associated side effects.

    I do hope they will be able to medicate in respect of patients genome very soon ...

  • Hello again Mistydawn,

    I chose to start with a nontoxic alternative first to see how it works, and it is still working. My protocol is AIP diet, LDN and supplements. I feel very lucky. If you really want to try to reduce inflammation without the meds try the diet. You can just start with leaving out suger, gluten and dairy, you should see results in about 3 weeks. For me however it took 3 months and I had also elimminated nightshades, legums nuts and seeds. I think everyone reacts differently, just like with meds. You should also have a look at LDN ldnresearch.org. Good luck😊

  • I,m afraid nothing works straight away Mistydawn.........if there is a drug that does I'd like to know about it. For many years I saw a Private Rheumatology Research Professor & I'm sure if anything like that existed he would know about it.

    I took Mtx very successfully for 7 years....it gave me back my life & although I eventually had to stop taking it I have no regrets at all. But I think I would look back with regret now if I hadn't had those 7 years of good quality life. I still have very little joint damage & if I hadn't taken Dmards & now Biologics who knows what state my joints might be in?

    I follow a sensible diet, don't smoke do drink wine & I am satisfied I am as well as I can be without worrying about exclusion diets or other regimes which have no scientific proof that they can help with RA. I did toy with a couple of "natural' diets years back....but the food was so unappetising I couldn't bear to continue.

    I do hope you find a treatment that you can come to terms with....but please don't wait until you might have irreversible joint damage. I speak to ladies in RA clinics who were just not offered the drugs we have access to in this country & they are really grateful they can now have them.

    Good Luck whichever path you take.

  • Thank you AgedCrone. Wise words indeed. Yes we are lucky with all the meds available to us and I can't complain about my consultant either, he has been fantastic!

  • Hi Mistydawn,

    when you say three DMARDS didn't suit , in what way if you don't mind me asking?

    Allergy? Raised Liver enzymes?

    Are you on Oral steroids? ( Now those are a drug to be concerned about)

    I had two little achy fingers for about two years which I totally ignored putting it down to all sorts of reasons before WHAM explosive polyarthritis in multiple joints from head to toe and subsequent total disability.

    My liver said no to Mthx and Leflunomide so now I inject Enbrel once a week and take Hydroxychloroquine twice a day and Naproxen twice a day.

    I'm allergic to the Hydroxychloroquine ( all over itch) so I take antihistamines for that.

    From not being able to wash myself, wear anything with a button or zip or even put socks on for 6 months I am now back at work and feeling better than I could possibly have imagined in those dark awful days of screeching pain.

    The steroids that I had in rescue doses gave me steroid induced Diabetes so at one point last year I was on 20 plus pills a day.

    But back to those two achy little fingers that I ignored, ( I'm sero negative by the way) well, I look down at them and I see the slight unnatural twist and bend in them and wonder how long I had suffered active disease being unmedicated.

    I'm of the opinion that all the gluten free, whole food, lactose free, etc etc diets in the world would not have made one iota of difference to my twisty fingers.

    When I look down at them I thank my lucky stars the protocol here in the UK is aggressive treatment right at the start.

    What I'm trying to say is I think you would be unwise to turn Abatacept down if your consultant thinks you need it.

    Purely my own humble opinion and I sincerely wish you the best of luck for the future which I hope going forward sees you pain free and living as normal a life as possible.

    Mx

  • Thank you Mandalou. HCQ caused hyperpigmentation, MTX caused raised liver enzymes and LEF stopped working and causing chunks of my hair to fall out.

    I will go and see my consultant with an open mind in November.

    Thank you x

  • Let us know how you get on in November Misty.

    After going through all that with the first line DMARDS it is no wonder you are being offered a Biologic.

    Keeping everything crossed that between you and your health team you reach a great compromise and that you get the reassurance you need to make informed decisions.

    All the best Mx

  • Thank you Mandalou 😊

  • Dear Mistydawn,

    I'm sorry to hear that you have not yet found a medication that works for you. Unfortunately it is still a little bit of trail and error to find the right one for each patient although there is exciting research going on at the moment which will make targeting therapies much more accurate.

    In the meantime, it's helpful to remember that although there are lots of people posting on this forum who are perhaps not well managed and looking for answers to questions, many more are not posting here because they ARE well-managed and not needing support as much!

    Our own article on Orencia (Abatacept) is currently being reviewed however you can read more about this medication on the ARUK website here - arthritisresearchuk.org/art...

    Do contact the NRAS Helpline (0800 298 7650) or your own Rheumy team if you have any other questions or concerns.

    Kind regards

    NRAS-Emma

  • Thank you Emma. That is a good point you make about patients who are well managed and thus not posting on here!

  • I've had my JIA for over 20 years. Biologics have been a complete lifesaver for me after failing with both mtx and leflunomide after several good years on them. I had to have cateracts removed from both eyes and both hips replaced due to side effects from steroids and OA developing in my neck at last bone density scan (12 years on first pred and then deflazacort). I started biologics in 2008 and I have very few side effects from them, apart from stuffy nose in the morning and alergies to pollen and general skin itchyness for which I take an antihistamine daily. When I was diagnosed at 14 my mum and I tried all sorts of alternative therapies, including the diet the other guy talked about, which did nothing but waste my mum's money. I teach a class of 4/5 year olds full time, go to the gym. I've cycled 60 miles. At the end of the day it is your decision but it's my opinion that the good the biologics do far out weigh the negative. Mine have also allowed me to stop the leflunomide altogether. I hope you work it out and make the right decision for you. X

  • Thank You Ruth. I am so sorry you were diagnosed at such a young age! Thank you for your feedback, I really appreciate it. Take care x

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