Hello everyone, this is a familiar story - newly diagnosed with inflammatory arthritis , probably RA, after a sudden shocking and debilitating 'flare-up' in December 2018. I had no idea what was happening to me and I still can't believe it all.
I have now been prescibed methotrexate, hydroxychloroquine and folic acid but I'm a whole person/natural cure sort and the thought of taking such drugs (not the folic acid) horrifies me. And how do they know it will happen again? I've started on the hydroxychloroquine with no apparent side-effects but I'm so worried about taking the methotrexate.
Plus, blood tests showed paraproteins and after recently having a bone marrow biopsy, it turned out to be low grade non-Hodgkins lymphoma so I'm on an active monitoring scenario for that. So now I'm worried about taking methotrexate which affects the immune system when there's some research which shows that those with RA and taking it also develop lymphoma.
Really I could weep. Any comments on all this would be welcome.
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Chiyoblue
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Sorry to hear of your diagnosis. It is a bit of a shock, and to have a possibility of low grade non Hodgkin's as well must have floored you.
I don’t imagine any single one of us wanted to take Methotrexate, or indeed any of the drugs! It’s a very personal and difficult choice that we have to take. Only you can weigh up the risks and benefits. In my case it was a total no brainer as the disease was aggressive, ferocious and immediately disabling. And the initial flare just turned into out of control RA with no respite. However, if your experience has been more gentle then perhaps there’s time for you take it one step at a time. And focus on getting yourself as healthy as you can alongside the hydroxy.
However do remember that RA is systemic, so it’s not just your joints that are at risk if the inflammation is not controlled.
But on MTX you are well monitored, so any emerging issues are usually picked up quickly.
Reading about your experience I'm beginning to think I'm not so badly off. I've been more or less all right since the beginning of April which is probably why I'm so unwilling to start the methotrexate - it feels like I'm okay. But I've taken note of what you say and thank you, it helps me to make a decision.
Chiyoblue, very sorry you have joined the club and with added complications. I take Methotrexorate and hydroxy without any issues after one year other than if I forget the pains start to come back. I wish you the best with it all.
I was worried about mtx so i asked if i could try hcq on its own with the understanding that if my blood work got worse i would start mtx. I also looked at my lifestyle and made changes to de stress.
I be interested to know how much you think stress is a contributory factor to your condition. I've read that although no certain cause is known for inflammatory arthritis, stress is one of the posibilities.
I believe, for me, stress has everything to do with me getting RD. I don’t smoke 🚭 I drink 🍷 in moderation I eat healthily I’ve also been extremely active never been overweight & there’s no history of RD in the family. A few yrs ago I had tragedy after tragedy in my immediate family result RD. Whenever I’m stressed 😥 I flare. My opinion only of course.
Hi I would ask to see an oncologist as a Rheumatology consultant will only understand that field. If your body is fighting low grade non Hodgkin lymphoma (and winning at the moment) then I would be very concerned about taking a drug which will reduce your immune system. I am not qualified in any way.
Hi Chioblue, like you this is my first post. After a year of pain and swellings, I was diagnosed in January with inflammatory RA, seen by a rheumatologist and given prednisolone for a while . I had good results and more strength and movement. Sulfasalazine was introduced and from the start got horrible side effects and a feeling of being poisoned. I persevered as I understood this to be part of the course, continuing for 6 weeks . I developed a big red blotch on one cheek, phoned the rheumatology nurse who told me to stop . The rheumatologist phoned and told me not to take anything until he sees me at the end of June. In the meantime, I have multiple pains mainly in shoulders , arms, hands and feet, and no energy. I can't feel optimistic about starting a new course of treatment, and until this lot was reluctant to even take a paracetamol. I know I must overcome this and will do as suggested, but at almost 75 I'm finding it a struggle. I don't know how I'd manage if I had the addition of Hodgkin's as you have,so keep your chin up, keep smiling and rest and eat well!
Hi Jrosalind, thank you for your support, I feel like I've had any easy time compared to you because after 3 months of pain, swelling, fatigue, weight loss etc I've gradually got back to more or less normal. I'm not surprised you find it a struggle and I'm very sorry to hear that you are having to wait so long before you see the rheumatologist. Please let me know how you get on.
Hi Campaigner, I hear you and what you have said makes me feel less alone. I'm especially glad to hear that you've had a positive experience with methotrexate - thank you.
Hi Chiyoblue,What a raw deal to receive not one but two awful diagnoses in the space of a few months, that really is rotten luck and I feel for you.
Like you I had always taken a holistic and largely alternative approach to illness until I was diagnosed with RA. I was prescribed Methotrexate and was reluctant to take it, but my rheumatologist frightened me by saying I'd be in a wheelchair in 5 years if I chose not to take it.
However, for two years I ignored him and explored every other avenue - acupuncture, exclusion diets, treatment from the Royal Homeopathic Hospital etc and only taking steroids when the flares were really bad. None of those alternative methods made a jot of difference to the RA which rampaged on and all I had to show for my 'resistance and research' was really bad permanent joint damage pretty much everywhere. However I did have peace of mind that I had tried everything before surrendering to the 'evil' methotrexate (and later, biologics).
Unless you are fortunate to just have one explosive flare of RA which then disappears, the likelihood is that you are just at the beginning of your journey with RA which is by definition a long term condition which causes progressive joint damage, when not controlled by drugs.
Preventing joint damage is key, and early intervention with methotrexate is one of the best ways to do that - I've been on it for over 20 years (first in tablet form, now by injection) and been lucky enough not to have any direct side effects. Some people can't tolerate it, but generally it is the first go-to drug of choice.
You're being actively monitored for the lymphoma scenario and you will be too if you decide to go on methotrexate - initially you have monthly blood tests to check liver and kidney function (amongst other things) to see how well you're tolerating the drug. In my experience the monitoring is pretty vigilant because of the known (but rare) incidence of drug-induced lymphoma; just make sure the RA consultant is communicating with whoever is dealing with the NHL and keep turning up for all your appointments.
Do I regret not taking methotrexate in the beginning? Yes and no. Yes because I have so much irreversible joint damage, very deformed hands and feet and have had both knees replaced; no because I'm stubborn as a mule and had to eliminate every other possibility because my belief that 'Big Pharma peddles poison' was so deeply ingrained in my thinking. I was wrong.
Your reply has been so heart-warming - to know that you have travelled the journey I'm now forced to make - especially since you have similar views concerning allopathic medicine, it makes me feel less alone. Not least is benefit of your long term experience on taking/or not taking methotrexate. I have read so many posts on how awful are the side effects that it is encouraging to know that it is possible not to have any.
I will think very carefully about what you have written and I thank you for taking the trouble to reply to me
I took MTX plus hydroxy, plus sulphasalazine with virtually zero side effects once I’d adjusted. And now also take biologics. I personally feel that because I make an effort to live healthily this has helped my body tolerate the drugs without a problem. It is not inevitable that you will have side effects, but people only tend to post about it when they do.
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