Mild symptoms vs drug side effects

[aod75]

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!

[helixhelix]

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.

[aod75 in reply to helixhelix]

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.

[helixhelix in reply to aod75]

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.

[E_2b in reply to aod75]

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

[Megs4]

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.

[Felldweller]

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.

[aod75 in reply to Felldweller]

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.

[Hessie5 in reply to Felldweller]

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

[E_2b]

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.

[aod75 in reply to E_2b]

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

[E_2b in reply to aod75]

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

[helixhelix in reply to E_2b]

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!

[E_2b in reply to helixhelix]

Thanks for your positive and informative words.

I wish you so well and so much health

[Mandalou]

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

[HappykindaGal in reply to Mandalou]

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!