I stopped MTX injections about six weeks ago due to infections. I meant to begin again the following week but have been unable to talk myself into it. I have an appointment with my Rheumy Dec 11th re Rituxan. The issue being the drugs do nothing for me and have many side effects. So have been resisting for sometime. I love my Rheumatologist but not the drugs. I do not want to keep taking drugs just to keep a doctor.
Any suggestions ?
Call his helplHelpline and explain the above. You will need some help as biologics take about three month to kick in but if your dmards doesn't suit you then I'm sure they will change it.
Your the patient. Just talk to the doc!
I have tried four DMARDs and four Biologics. I have also proven allergic to antibiotics etc I just do not want anymore drugs. So I am ok with no more doctors as well. I am aware that my reality may soon change but until it does. When the inflammation comes back I will decide how to move forward. I just know that for now, the side effects are not worth it. There have been no benefits to offset it. I have also managed to not take Opiates since August. It just becomes overwhelming some days. But I just cannot look past my anger right now.
Hav'nt you answered your own question? if that is how you feel that what can be done as there is no 'cure' for RA just management of the symptoms. For me Lef made the pain worse but I stuck with it and after about 12-14 weeks it just sort of worked and that was 3 years ago now. I have an allergy to Penicilln but there are loads of other antibiotics available. I don't know how long you took the MTX for but feel you should talk to the RA nurse who may be able to help before you see the consultant.
I wish you well and hope that you do get some much needed help soon.
Did you get some sleep? Have you tried all the lovely herbal aromatherapy like lavender oil. Or heat packs help me rest and I take painkillers and a hot milky drink.
Sleep does make you feel better . Hope you have had time to think about all the comments with good advice here. I would recommend talking to Nras Helpline they really helped me a lot x
I will try lavender oil. I have a chronic sleep disorder lol I think doctors forget how much that impacts wellness.
I had a Best Doctors Report done in 2015. They recommended my doctors focus on that sleep disorder but that was ignored as was genetic information.
The doctors in any country are territorial. They do not want other opinions, it seems. I have felt rather powerless this past two years. Between insurance, government and health care. I am trying very hard not to make decisions while in this state of mind.
I know that prolonged sleeplessness has done nothing to improve that mind set. I am seeing my Rheumie December 11th. I should have biopsy results by then so will wait to decide on future treatment options.
I hate working this out on line but quite honestly I find myself distrusting all other sources. I have come to believe only those affected can possibly understand the complexities.
Fair enough. It depends on whether you are doing it out of anger or desperation. I would never give up therapy. I would keep swapping until I got one that suited. It's just happened to me after 6 Yrs and loads of biologics and dmards.
If you come off the possibility of severe flares and joint damage is there.
I would d8scuss your worries with the s5aff. But it's ok to be angry at RA. It changes your life but do check if there's other drugs that he might advise.
Thank you for very sound advice. I am very angry with my GP. After seeing him for 18 years I have given up on him. The problem being my inability to find another GP taking patients. I do sympathize with their frustration but , with constant lack of sleep I am a lot less forgiving. I decided not to see him until I had calmed down but that does not seem to be happening. Perhaps because after two weeks I am still waiting for biopsy results.or simply that I do not know what else to do. Still waiting to if there is a reason for all this madness. Who knows ? It has been two and half years so MTX is not the answer. Maybe Zeljanz ? I will focus on the advantages and hope for the best.
We are all between a rock and a hard place. None of us "wants" to take these medications but it's the only proven way to prevent permanent damage to our bodies. I was just talking with a friend today and she kept trying for years and years until she found something that gave her better quality of life (and she's now back to adding methotrexate along with her biologic).
The other problem is if you become non-compliant. It's possible your rheumatologist won't want to see you if you tell him absolutely no medications. I mean there's not much that can be done then for you, if you refuse the medications. Just a thought, I don't know of course but it's a possibility.
Hello there, I think the best suggestion is to clearly explain to your consultant your fears- perhaps adjusting the dosage of your methotrexate may help. It may also help for you to have a copy of the NRAS booklet Medicines in Rheumatoid Arthritis which gives information on all the medicines that may be used in treating RA. You mentioned rituxan which is a biosimilar of rituximab which is administered via infusion rather than injection. You also mentioned Xeljanz (tofacitinib) which is a JAK inhibitor which has a different mode of action in controlling inflammatory arthritis. All of this is covered in the booklet which you can get free by emailing enquiries@nras.org.uk or visiting the nras.org.uk/publications
You can also call the NRAS helpline on 0800 298 7650 and if you like you can be put in touch with an NRAS telephone support volunteer who has been on either of those medications who you could then chat to over the phone.
You're not alone and we're here to help and I do hope that the right treatment regime can be found for you very soon.
You decided not to give Mtx another chance so you can't really complain now that you aren't feeling any better can you?
Some drugs take a long,long time to work....it sounds as if you have convinced yourself nothing will ever work for you....but I think we are lucky to live in an age where we have such a huge choice of medication.....it is miserable when yet another drug fails, but if you stop all drugs you will no doubt be worse off in the end.
You have to take a deep breath & decide which path you are going to take & trust your medical advisers......after all they have taken years to train to help people like you.
Hope you find something that suits you soon......then .stick with it.
It's your low mood which is making you say "Nothing ever has and never will work".
No you haven't tried everything yet! There are ladders that can help you out of this hole you are in right now, but they may well be rope ladders that are difficult to climb.
Many of us have been where you are, believing that nothing will help, only to find that something does at last - it's just like a game of snakes of ladders only for real.
I can see that even after years of not responding that can change. It is simply less likely. I try not to worry about it to much. My concern has been financial. I have a CI policy which I have been paying for 15years. I want to collect and ensure my ability to survive now that I am unable to work. Boring but the financial planner in me is practical lol. I am very pragmatic. I am very frustrated by my failure to respond to drugs. I have such a long list of allergies that it make it frustrating for doctors as well. It just takes time to reboot lol I rely on those of you with experience to guide me. I will consider MTX again but only if my doctor believes it will change. So far after two years it has made no difference. I do not see how that is suppose to change.
Ask to go onto another dmards there's l9ads of them ! I have suplhasalasine , plaquenil and leflunomide. No side effects .I couldn't manage mtx either and it didn't work for me but the other ones do. Your go needs a list of dmards I think!!
Allergic to Sulfa and Lefludemide but there are still options. I will continue to try other drugs but need a break from it to clear my body. My inflammation remains low so until that changes I want to try a natural approach. Diet and lifestyle changes. I realize that may change suddenly but for now I will give it a try.
Am I being silly???
Am I in the right place
I am struggling to sleep
I am so sick of this pain in my back....................................
