NRAS
22,849 members26,554 posts

Mild symptoms vs drug side effects

I was diagnosed with RA in March. I've tried plaquenil and mtx. Had rotten side effects with both so rheumy has prescribed enbrel. My symptoms are mild. I'm not in pain. It's mostly stiffness and tiredness. Anyone out there with similar symptoms that decided not to take meds? Am worried about side effects of the meds but also about long term joint damage if I decide to go with no treatment. I hate feeling tired all the time but the meds I did try made me so much worse!

15 Replies
oldestnewest

Wow! Where do you live? As very unusual to be offered the opportunity of biologics so soon, and with only mild symptoms. And Enbrel itself rather than biosimilar.

Perhaps there are other reasons why your doctors think it very important for you to get the disease controlled.

It's a difficult choice to make between damage and drugs, especially if your symptoms are currently mild. In my case I was in so much pain and so quickly disabled that I would have accepted anything to get it under control. But only you can make that decision. I just offer two thoughts. First off, even if you start a drug you can always stop taking it whenever you want, so deciding 'yes' now doesn't mean 'yes' forever. And the other thing is that research shows that early and aggressive treatment has the best chance of a person getting into remission quickly and staying there. Waiting until the disease has got way out of control make sit much harder.

6 likes
Reply

Thanks for the reply! I live in Ireland. I think maybe that biologics are prescribed quicker here than in U.K.?

The rheumy did explain about early treatment giving the best prognosis alright.

I think you're right and I really just need to try it. It did seem like a very strong drug for my symptoms but you're right, it's about getting it under control now before it gets worse.

2 likes
Reply

Ireland makes more sense....you would be unlikely to be offered them in UK. I just hope you don't have to pay a contribution for your prescriptions as they are VERY expensive.

Reply

You live in Ireland!

Go see Dr Sean Dunphy carrigaline County Cork the man is a genius.

After I ended up in A&E vomiting blood from methotrexate, Dr Sean Dunphy cured me.. just saying in case it helps

Reply

Wow! Rheumatologist is right onto it! A crystal ball would facilitate your decision. You will be monitored for side effects if you start. I wish I had been diagnosed years earlier and I wish I had been offered the same treatment you have much sooner. Pretty tight with the good stuff here in Australia. Very much agree that early and aggressive is good so grab it.

1 like
Reply

Hi there. I was really interested to read your post, as your symptoms and problems pretty much mirror mine. I have a mild, seronegative arthritis, at the moment, diagnosed last May. I was put on sulfasalazine, after refusing to take methotrexate and hydroxychloroquine. I did really well on this drug, but reacted badly when the hydroxy was added. I SO wish I had stuck to my guns and stayed just on the sulfa. Long story short, I have basically been without meds since last November, because whatever they put me on has to be stopped after a few weeks due to bad reactions. But I'm coping, I am somewhat stiff and sore, my legs are horribly weak and wobbly (I use a stick, otherwise I would just fall over) and the fatigue/lack of strength and stamina is hard to live with. But I AM coping, without any of these toxic drugs in my system. But I do worry horribly about what might be around the corner if I DON'T take something. But at the moment it seems that I physically can't start any new meds without serious reactions. So I am doing the best I can to help myself. I have chucked out a lot of rubbishy stuff I used to eat and I exercise as much as I can each day. If my rheumy can tell me that the disease might well just grumble along as it is doing, for the foreseeable, without any joint damage still, then I will keep off the meds. I am going to ask him if there is something I can take to help with the lack of energy/stamina and which would also give me my own legs back, as I'm sure I have someone else's, which is why I don't know how to use them! Good luck to you. Felldweller.

2 likes
Reply

Hi Felldweller. I made some big changes to my diet too and found it helped a little. If I could I would really like to avoid the drugs too. But writing the post and reading the replies I think has clarified my mind a little. I think I need to give the enbrel a try. I have 2 small boys and I'm really struggling with the lack of energy.

Hope it all stays manageable for you. Good luck.

1 like
Reply

I am so tempted to go this route just started another Biologic in tablet form today! Hoping it will help the pain in my foot. Well done to you though. All the best Hessie

Reply

Yeah Methotrexate made me very ill... ending of being hospitalised ETC in 2015.... I refused biologics.

3 years later now I'm perfectly fine as if I never had it.

I did a lot of things that worked for me antibiotic approach removal of an infected root canal procaine in solution hyperbaric oxygen, changed my diet etc all symptoms gone now.

Best wishes on your journey.

Reply

E_2b that's great that you have done so well without meds. I hope it continues!

Reply

Thanks yes you are kind, met my pharmacist just today who said " it is great to see you in remission"

I don't take it for granted.

I wish you very well

Reply

Interestingly another member, Cherub, was originally diagnosed with RA. Later on it became evident that an infected root canal had caused a reactive arthritis and when root canals were removed she too recovered.

I think there should be more awareness of these sorts of things, to stop people spending a lifetime on drugs when some good dentistry would do a better job!

Reply

Thanks for your positive and informative words.

I wish you so well and so much health

Reply

I thank my lucky stars every day that I fit the criteria here in England for Biologics. Enbrel then the Biosimilar Benepali.

I take it once a week and Hydroxychloroquine twice daily.

I had very raised ALT on Mthx and Leflunomide and was very allergic to Sulfasalazine. Then my DAS28 was significantly high a month apart this made me eligible for Enbrel which gave me my life back with no side effects.

I know 100% that it is keeping my severe symptoms at bay because I e just had abdominal surgery to clear adhesions from a prior gall bladder removal and a cyst and an ovary removed and I had to come off the Benepali two weeks before and two weeks after and by the third week the familiar bone searing pain was back in my index finger and middle finger and the back of my knees felt full, boggy and trembly.

I thought dear God this would be my reality if I didn't have the drugs. There is no diet on earth that would stop the dreadful onslaught.

I do however believe in healthy living for general good health and prevention of other diseases.

I also passionately believe in there being no such thing as ' mild' Rheumatoid arthritis. Just levels of disease activity. This is why treat early and treat hard makes sense to me.

Think carefully about turning Enbrel down.

Mx

2 likes
Reply

I totally agree with you. If I didn't take the drugs, I'd have no life and thats a absolutely not going to happen. I have things I want to do!

2 likes
Reply

You may also like...