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Disgusted with meds

brazant profile image
13 Replies

Hello I am using the name Brazant. I was diagnosed with RA 2 years ago. My family doctor started treating with Diclofenac and Meloxicam for inflammation before I saw a Rheumatologis. My symptoms were not that bad until I started the medications. the first doctor I went to see due to my family doctor stated I need to see because of inflammation told me I did not have RA. A year later I was diagnosed. The first medication I was put on by my Rheumatologist was Sulindac along with steroid shots and the Duexis for pain. It has been a long hard 2 years. The Sulindac began to elevate my liver enymes. The I was put on Leflunomide after the Sulindac did not work. I took the Leflunomide which caused me to have several bowel movements a day and I began to lose weight. During the summer months my RA is not that bad and I don't always take my medication. I decided to try a new RA doctor and she put me on Methotrexate 2.5 mg and I was so tired all the time and started to have blood in my urine, but can only be seen under a microscope. I cannot see it in my urine. Sometimes I just want to scream. I am dealing with this issue now and have been put back on Leflunomide. I did not want to go back to Leflunomide. However, my Rheumatologist stated the next step is a biologic and I will have to give myself a shot. I definitely do not want to be put on a biologic. This also may be causing blood in the urine. I am really concerned at this point. I am not sure what to do at this point. I have to work and this is stressful to deal with.

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13 Replies
andyswarbs profile image
andyswarbs

If drugs aren't working then perhaps it is time to look at dietary changes to help. Just google diet and rheumatoid arthritis and I am sure a slew of potential solutions will appear. Most doctors and rheumatologists will say diet has no effect, but I for one say they do. 10 months ago I was using a wheelchair, now I can walk around at a normal pace pain and inflammation free and diet is one major tool for ensuring I have an RA free life for the rest of my natural.

One caveat, it takes discipline and focus to change your diet. Marrying that with work is not going to be easy.

brazant profile image
brazant in reply to andyswarbs

I plan to change my diet and I hope it works.

nakkita profile image
nakkita

I agree that diet works wonders for RA! It did for me. I also feel betrayed by rheumatology doctors.

Hi Brazant - It truly is easy to reach the same place you are in. There are many routes you can take other than the MTX / Biologic route - Diet, Low Dose Naltrexone, Minocycline are all alternatives. If you are in the UK though I don't know what they will "allow". If you search the RA boards here by those three topics, you will find a plethora of information that may help you make a decision. Unfortunately, the "Gold Standard" for RA right now is what your Doc is offering you.

Good luck in your searches!

brazant profile image
brazant in reply to

I'm in the U. S. and will certainly research the medications you mentioned.

GoatGirl56 profile image
GoatGirl56

RA treatment is truly the most frustrating and confusing thing I've experienced. I agree with the comments about diet - but from my own experience, this has not been enough. I've been a vegetarian for 47 years, eating little to no sugar, processed foods or dairy. With the RA I went completely vegan and gluten free, taking supplements and Methotrexate and exercising (when the MTHX didn't have me too fatigued). I am keeping my dietary changes but trying to take better control - I mean I love my rheumy, but he does push multiple drugs. I talked him into reducing my MTHX dose as I felt worse when he upped it. I declined adding Embrel. I did some research and found multiple studies showing link between serotonin and RA. I went to my primary and she agreed to put me on a serotonin re-uptake inhibitor (generic Zoloft). I'd been on this previously for peri-menopause symptoms, so I know it was benign.

I'm beginning to have some real relief for joint pain. walking more, sleeping better. I still have fatigue and headaches from the MTHX, but planning to try reducing more over time (in at least one case study, increasing the serotonin levels has been shown to get rid of the inflammation without drugs).

I use Kratom for morning stiffness and "blah" feeling. Most of all, I try to move as much as I can - using rowing machine and walking. Hope this helps!

brazant profile image
brazant in reply to GoatGirl56

Thanks

in reply to GoatGirl56

Hi Kwise - I did the opposite from you - went from mostly vegan to carnivore - high fat low carb, and like you found a world of difference. I got off of the MTX and onto Minocycline, and have had much the same result. I really think it is up to what each body wants / tolerates / utilizes. Like you I also refused the biologics.

Interesting about the Kratom. I had just heard of that from a friend of mine recently for use as an analgesic. I haven't tried it yet, but she tells me that they are thinking of making it illegal in the US - of course. They don't want anything here in the US that doesn't enrich Big Pharma I'm afraid...

SherryKayB profile image
SherryKayB

So sorry you have had such a miserable RA med experience. I have been pretty fortunate, having tolerated Methotrexate for many years and the addition of Melexocam the last year or so. I do have occasional flares, treated with Prednisone. I am in a flare now and tapering off the Pred. Our bodies are so unique that what works for one doesn't help another. Keep trying. Do some research yourself and keep seeking an RA doc you can work with and trust. My RA doc just retired and I have not seen his replacement yet. Fingers crossed. Prayers to you.

brazant profile image
brazant

I'm glad your medications work for you.

RA2016 profile image
RA2016

Be careful of diclofenac. I was not on it very long and now I have stage 3 kidney disease. Its unfortunate that meds seem to have such bad side effects.

nakkita profile image
nakkita in reply to RA2016

People don't need the meds at all the doctors and big pharma only care to run a business for profit not a healthy lifestyle! Do your own research and homework and know there is a way to live in remission parmacuetical free!

brazant profile image
brazant

I am sorry to here that. I have been on that medication also. It seems like all the RA medication can cause very serious side effects. I may want to try natural treatment and see how that works.

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