I haven’t been online for nearly a week because I’ve been very unwell. Only it hasn’t been RA that has knocked me down this time – it was an adverse reaction to my meds….methotrexate and prednisone.
As a result I’m going off all my meds. (Doctor approved). Except maybe plaquenil…it’s so innocuous it hasn’t done any harm. Don’t think it’s helped at all either though.
Anyway, today is meth day and I’m not taking it. I am never taking methotrexate again. I was so determined to tolerate this drug this time. But after my fourth attempt – and managing for six weeks – it’s over. Some people can’t tolerate methotrexate. I am one of them.
The really sad thing is I think it was helping my joint pain. That’s one of the reasons I was trying so hard to persevere. The other reason is that, being in Australia, if I can’t tolerate methotrexate or officially ‘fail’ methotrexate (3months at 20mg or more) there are no other treatment options.
Or that’s what my rheumatologist told me. I know that some rheumatologists ‘fudge’ things so that their patients can get the expensive biologics. Maybe I will try to find one of those.
Or maybe I am now so afraid of drugs and their adverse effects that I don’t even want to go there.
I am tapering off prednisone as quickly as is safe. I’m at 6mg right now. I’ll taper down by a 1mg every five days. I’ve been on prednisone about 16 weeks now, so I can’t taper any faster. Even though everyone agrees I need to get off this drug now and forever.
So in about 4 weeks I will be drug free. I have stopped my Naprosyn. I might still take plaquenil. I haven’t fully decided.
As I have been tapering off prednisone, the pain has been increasing. You will remember that the reason I went back onto prednisone, even though I swore I would never take it again, was because the pain got so bad, 24/7, excruciating, unable to function, that I needed some relief. I was looking at walking sticks and not able to drive safely.
That was also why I agreed to try methotrexate one more time. It was the only option. Or face a lifetime of pain.
My own determination to beat this drug was my undoing – I knew it wasn’t doing me any good, and I continued to take it. I should not have.
It’s a week since I last took it, and I am starting to feel better. I should take it tonight. I will not.
I am going to find out what my baseline is now. After five years of trying every medication under the sun and feeling a bit better, and then a whole lot worse, then a bit better, then a whole lot worse…rinse and repeat…I am now going to see what ‘normal’ for me is. How much pain I truly have to live with.
As I’ve said before, I don’t have a lot of joint damage. Or not visible on x-ray, anyway. My fingers only swell sometimes, and there’s only a very little deviation. My feet are the same. I can see the changes in them, but they are definitely not severe. My knees swell sometimes. The pain in my hips, shoulders, elbows and ribs is completely invisible. My bones pop and crack…but that’s not damage. That’s just noise.
So I am now going to see what day to day life is like unmedicated. I may have no option but to look at alternative therapies, diet, herbs, I don’t know what else.
I don’t recommend this. My doctors agree that I need to go off all medications. I am not saying anyone else should. I am actually a bit scared of what’s going to happen over the coming weeks. I know I need medication. But I also know that my body is not tolerating the heavy duty drugs. So I need to ‘detox’ for a while. And then, in consultation with my doctors, decide what to do next. I see my rheumatologist in six weeks. By then I will have been prednisone free for 2 weeks, and methotrexate free for 6 weeks. I stopped taking Naprosyn six weeks ago, because my pain levels had improved so much I thought I would try to go without it.
So no more meds. I don’t have a choice and I’ll document how bad “bad” gets here. If you have any non-conventional medicine treatments that have helped you, please comment and let me know.
I am already taking fish oil and vitamin D. I am going to exercise as much as is possible. I can already feel that there are many exercises in the gym that are off limits from here on in. The pain is increasing. My grip strength is decreasing. The distance I can walk is decreasing.
Wish me luck.
Good Luck! Hoping that there will be some type of natural products that will help. Each time I try to decrease or stop taking one of the meds, that’s when I know it must have been working. I do, however, refuse to take prednisone. Does it work, yes, but it just isn’t worth all the bad things it does.
You’re absolutely right, Claudia. Prednisone is not worth it! The same goes for mtx, for me. I’m at the point where I will try any therapy that has some evidence behind it, and is not too expensive! I will post my adventures 🙂 Good luck to you too – wishing you some permanent relief from pain.
I changed my diet & did resistance training (when I feel ok) – no sugar & no bread – whe I Stick to it I feel pretty good – it hard to stick to but just stop & start when you can – good luck
Hi Jac, really glad to hear that diet helps you! I am eating “Paleo” right now – no grains, no sugar, no dairy in a nutshell. I’m hoping it will help my pain levels. I’m also going to try lifting heavier weights – on the days that I can. You’re right – just persevere and do it on the days you can. Thanks for your comments.
Gof i never thought things would go such severe guys. I just ended up in a morning waking up with swollen knee and a stiffed leg can’t move a bit.. i called out ma frnds n dey did wat dey could but in vain . i found out its the strength of the drugs dat helped me past days im sick of it.. none of my hereditary had dis.. Im nw gonna leave dese damn medications n gonna bare the pain n live with it. if dats wat god wants me to do.
these drugs makes my body ill. o get hair loss often.
I thnk its time to go on my own.
Just wanted to share my felngs wit someone none wil undrstnd xcpt people who have dis.
I’m sorry you’re doing it so tough, Gotham. We all have to make our own decisions about treatments – I’m the first to agree that the drugs can be as bad as the disease for some. Good luck, and keep us posted.
Hey Gotham I have RA and it happened for me the same
Way, I woke up with swollen ankles and a stiff knee. I would
Advise you to start exercising while your on the meds.
It will help alot with the pain and stiffness. This disease is weird
You have to get to know it, start
With stretching joints that are painful
Untill it feels better then work on
Streng inning the muscles around the joint.
It takes time to work but if ur patient
U will feel so much better.
I understand, Gotham. The drugs are often as bad as the disease. Lots of people get relief and even remission…but others just get worse and worse, no matter what. I hope you find something that works for you, be it medication, diet, exercise or other alternative therapies. I believe diet and exercise play a huge role in your general wellbeing, and can keep depression at bay. Remember we DO understand here, so keep in touch.
hey there. I have RA and am on a lot of drugs for it, but I am working towards coming off them. I have seen a naturopath to assess my toxins – Heavy metal etc, and have changed my diet to almost vegan, i avoid milk and cream as they are acidic for me, no sugar, this is the worst thing you can eat when you have RA i get an instant inflammation increase if i eat it. Since I had a leaky bowel, the naturopath has me on special hebals to repair it, I am already feeling better, I also juice fresh celery, coriander, wheatgrass, beetroot, and kale this also helps repair the immune system and give you the nutrients the drugs deplete, I could not tolerate MTX but I am very glad, you really don’t want to poison yourself with medications, you can definitely heal RA with diet. Hope this helps, my specialist always said that diet doesn’t make a difference, he was so wrong. i am living proof, I also read a book called arthritis and common sense, it gives you hope that you can cure yourself, taking codliver oil helps too, i recommend that book if you are serious about getting better. I talk to many people with RA, they all say they don’t want to be ill anymore, but are unwilling to change their diet etc, so – stay the same and stay sick. bottom line.
Thanks Liz. I believe diet can and does make a huge difference to many people. It can’t hurt to try, anyway. I haven’t found anything that works well for me as yet, but I am always open to any therapy that there’s some evidence for. My rheumy said that anecdotally many of his patients found going gluten free helped them. So he was open to diet. Good luck, I hope you continue to improve and thanks for posting.
Thanks Liz for sharing this information, I do believe we
Can cure or send our RA into remission without meds.
I’m living proof too. U have to soul search and think if everything
U were doing before the RA and then stop it. Lifestyle change
Is hard, but can be done.
Hi Sandy, that’s wonderful that you are in remission. Would you like to share more about what diet changes have helped you?
I have server RA I take enbrel it helps greatly. When I had to be off if it this year for two months I was in extreme pain and was put on prednisone, am now weaning off a half a pill at a time. I was on 15mg went down 2.5mg at a time for a week period for each… But would highly recommend enbrel for anyone with server RA….
Thanks Terri – I’m so glad that enbrel works for you! How long did it take to kick in? I’m about to take my 9th dose…and its helping a bit. I’m just wondering if I can expect more improvement at this point. All the best!
I found out that I have RA! Surprise! I hardly have pain…some in my toes…No need to take any pain pills at all. I had a nodule on my knuckle …biopsy proved to be ‘RA’! I have NO pain or swelling in hands. Do I have to take all those horrible medications?
Wow Bev, hardly any pain sounds amazing! RA comes in all sorts of forms, and all sorts of severity. It sounds like things are mild for you now…I hope it stays that way! If I were you I would just keep an eye on things, do you have a rheumatologist? I think you need to have one, to oversea the status of your disease. But if you don’t need the horrible medications, yay you! Stay well!!!
My husband has been take off of all RA drugs as he has severe anemia.
It also looks like methatrixate has probably contributed to a bone marrow failure.
Something apparently they don’t go into when prescribing this so called wonder drug. I have never seen the medical team move so quickly in stopping all the drugs. Please be warned.
Methotrexate can have some pretty severe side effects. I’m so sorry your husband is suffering this! I’m very glad his doctors are on the ball though, and took him off the drugs quickly! I hope he recovers. Take care.
what are some common things that we can do for RA, these drugs like methotrexate is killing my husband Nona
I have two books by medical Drs who have autoimmune diseases and went off meds and are in remission with diet and supplements. I’m doing it. It’s hard but you need to remember to eat to live, not live to eat. The books are T he Wahls Protocol and T he Myers Solution. Got both of them on Amazon. Make a lot of sense.
Hi Barbara, I believe everyone should try diet change, as you say, it can be hard, but compared with living with the pain, I don’t find it hard at all! Unfortunately for me personally, diet has no effect on my symptoms. I’ve gone so far as to do an elemental diet (for my Eosinophilic Esophagitis), no relief for my RA though. I have heard plenty of stories of people who HAVE had success though, people who have low disease activity and even full remission, which is just awesome. I wish you all the best, post back and let me know how you go!
Hi,
Just found your blog. I have been trying to cope with diet and cbd oil. It seems to help with the “daily” pain, but the flares still kick my butt hard. Have recently started to have the extreme dry eyes and mouth (Sjorjens?) and that’s extremely irritating. I took an allergy pill yesterday because my seasonal allergies started up and that, coupled with this Sjorjen’s flare, I feel like a dried up sponge! Thanks for being a glimmer of honest truth for RA sufferers!
I feel for you! The dry eyes and mouth are horrid, especially with allergies on top. I used eye drops several times a day, I’m lucky the dry mouth isn’t so bad anymore. Best to you xx
I had polyneuropathy for years, last year was bad. I had to go back, he did the test again, and it was still awful. He ran a test and I had the RA factor. Since taking the methotrexate I had hope it would work, added Sulfasalazing and Humaira. My husband says I’ve been going down hill, I hate to agree with him. I walk like a old lady, things are to heavy to lift, cant function the way I use to I hurt. I also had Sjorjen’s and my nerologist said I could just treat the dry eyes with drops and drops for my mouth, which I just sucked on things. Cream for down below, itched everywhere. I went to the eye doctor and this is what you guy’s are going to love. He inserted plugs in my eye ducts, it does not hurt, it really helped. I still have a little dry eye but not like it was. I also have bunions and carpal tunnel surgery, before knowing I had RA. I have Neuromas and they are giving me shots, so far not working. Have a funny feeling in my lungs/heart, exray on lungs didn’t show nothing, wearing a heart monitor right now. Just wondering if ANY ONE has polyneuropathy along with the RA . I really can’t tell the difference except I’m going down fast.