STOPPING THE DRUGS !

[Pamak]

Has anyone stopped/ considered stopping their drugs? If so what happened. I am considering asking to come off medication because I feel so ill all the time. I have only been diagnosed 16 months and am fed up with feeling so rough and not having any quality to my life. Is the disease or the medication doing this???

[Strayleaves]

Hi Pamak

Sorry to hear you are feeling so terrible.

Nobody can tell you what to do re coming of your medications ..... it's a decision you alone have to make . The only advice I would give is to be educated as much as you possibly can about your RD , your medications, any alternative treatments , and the consequences of coming off your medications . You really don't want to end up in a worse position .

I would dearly love to come off my medications (methotrexate 20 , Enbrel , etc) , so would I guess 99% of people here , but , none of us want to be worse off. I am trying to find as much info as I can about this aggressive RD , looking into any "triggers " , research papers on trial therapies etc etc .

It may be that I will never come off these medications , or , I may at least be able to slow down progression of my disease....... but right now I won't stop them , because I know I would be in a far worse position in doing so .

Talk to your Drs and read as much as you can .

Good luck .

Karen .

[Nettac]

Yes!

I had a nasty reaction to sulfasalazine. Was then put on leflunomide. I was on it over eight months, and in that time had several flares, and my hips deteriorated. Also felt like crap! So I'm afraid I've stopped the leflunomide, as it clearly wasn't working.

I have not told docs, but continue to have blood tests. I'm having mri in August, abd also seeing rheumatologist. I see no point at all in continuing to take a seriously toxic drug if it's not working. I shoukd also add that I have gadtro issues and will be seeing someone about that too.

I'm not saying you should do this!

[Barrister in reply to Nettac]

Nettac, Leflunamide is know to cause gut problems. I have lymphocytic colitis so my rheumatologist didn't even bother with leflunamide as he said it was very likely to exacerbate the colitis. Clemmie

[anne999 in reply to Barrister]

I was on Leflunamide, I think it caused my Gut problem. however cannot get a straight answer from my Rheumatologist and strangely says I'm not to have any treatment at the moment untill Gut clears up!.

[AgedCrone in reply to Nettac]

If you have not told your doctor you have stopped taking Leflunomide having blood tests is a waste of time.

Your blood test is evaluated taking into account what drugs you are on.......so as I say waste of time if the lab think you are on a drug & you aren't!

[Nettac in reply to AgedCrone]

Actually, it's not a waste of time at all! Blood tests check for anaemia, inflammation and any further deterioration in my health. Vital, and important to know.

Just because I've stopped the med (for good reason I might add) does not mean I am not interested in my health, or that I should stop having blood tests. As is frequently pointed out on here...the disease doesn't go away!

My bloods were all over the place whilst taking leflunomide. Will be interesting to see how things have changed now I'm off it. The drug made bowel issues worse. Plus I was still having flares and joint deterioration. Pointless taking a seriously toxic drug if it's not working.

Not only that, it was suggested by gastro people that I should stop it. I discussed with GP and it was decided that I should stop it. Rheumatologist insisted I go back on (despite clear deterioration) basically because they aren't going to offer anything else at this time.

No thanks to that!

[AgedCrone in reply to Nettac]

You miss the point.....I agree taking a drug you think is harming you is sensible, but if the laboratory testing the blood read the results thinking you are taking leflunomide it skews all the other results.

[helixhelix]

I think you need to talk to your rheumy. If you are still feeling rough after over a year, then it could either be the medications or the disease. What do your blood tests say? And how many times have your meds been changed/increased? As it could be that the disease is still very active and that's what making you feel rough.

Equally it could just be that you are not tolerating the drugs well and you could do better with different ones.

I did try to come off drugs one time. I was tolerating the drugs well, and had achieved remission. I had also made big lifestyle changes, so was hoping that would have made a difference and I would be able to taper off the drugs. Basically it was a disaster. I flared badly and it then took ages to get the disease back under control.

[JCSWAG]

Hi just read your post. I live in the North East area, do you? I was diagnosed with R.A just recently but have been having extreme pain issues with my hands, feet, hips and knees for a long time.My GP and the pain clinic put me on various pain relief including Pregabalin, Tramodol, and Zomorph!.

I have now seen a Rheumotologist and he has just prescribed along with all the above meds, Methotrexate and Dihydrocodiene, I feel like a complete 'Druggy'. Over a period of the past 2 years I have tried coming off all of the tabs and I was in so much PAIN......I also had 'WITHDRAWAL' symptons & effects to cope with too, I am hoping to be seen again by my pain team as I don't know what to do either?

This 'Bloody' is ruining my life and has made me into a completely different person, an angry and hostile person whereas before I never liked any conflict or anger in my life.

I have also had to change my job and find part-time work which is now causing financial problems in my life and to top it all I can't receive any benefits.....

I do hope you can find an answer but I will say this for sure you will suffer more if you stop taking your meds. Jan x

[Roz1955 in reply to JCSWAG]

I don't know if you're aware but CBD is now Def legal in the UK.

I started taking it and have felt definite improvement without side effects.

Perhaps look at Facebook page CBD Consumers UK/EU. Loads of info from people with RA and other VERY painful conditions.

Good luck x

[Damaged]

I feel for you Pamak. This is a decision you need to make with your Rheumatologist.

I have an endless list of drug allergies and intolerance. In my case I stopped all drugs for several months. I triggered a spontaneous remission.

I am now back on Methotrexate injections and scheduled for Rituxan infusion Monday. I am very anxious about infusions. My Rheumie reminded me that not so long ago people with RD were institutionalize do and in wheelchairs . So yes drugs are intense with many side effects but this disease is progressive and aggressive.

I lost two businesses so I understand your frustration however, the reality is , life as you knew it will never be the same.

Bright light is the incredible technologies and treatments yet to come. Nanotechnology , genetics and the 'great leap forward in intelligence who knows ? A cure could be right around the corner. I am so sorry you are struggling at the moment. This to shall pass. I say find a way to laugh. A movie, friends comedy whatever works. Sadly I cannot use NsAID's , Steroids or opiates lol so try to release as many dopamine a as I can😜

[Billybongos]

Yes I no what your saying pamak ..I keep thinking the same but am afraid of the consequences. .guess you will have to decide what's the lesser of to evils the ra or the poison u have take to try to control it ....big hugs to you

[Damaged]

Wow, sorry about all the typo's . I am still trying not to delete messages lol.

I also felt I should say that my remission has continued. I was diagnosed July 2015. I have been through four DMARD's, Humira, Orencia and Cannot take Actemra.

In the first year I saw a Neurologist (3), Gastrointestinal, Dermatologist, Ophthalmologist, Cardiologists, Rheumatologist, internist, and my GP. I was on eight drugs and weighed 103pds. I reacted very badly to Prednisone as well. So I just stopped everything under my doctors care, of course. I will also stress that I have multiple conditions and very severe RD. I am allergic to aspirin, Sulla, naproxen, Leflunomide, Immitrex..you get the picture lol

I do not want to frighten you as

[Damaged]

Sorry I meant to cancel this message and sent it instead. I wanted to say this disease is different for everyone. Some find they can function well without drugs, others respond very well to MTX . It may be frightening but the goal is to prevent damage before it happens. The severe side effects are rare but do happen. They do take every precaution. Do not worry. You may respond well and have no side effects at all😄

[helixhelix in reply to Damaged]

The little button to the right of the "Like" button allows you to edit your posts if you want to.

[FionaHerts]

I've never come off my medication, but had to go down to the minimal dose, 7.5mg Methotrexate, for 7 weeks over Christmas while a medical condition was investigated. At first I felt fine (aha I thought, my RA has gone!) but within a few weeks I started with the most almighty flare. It's the worst I've ever been and I was so unwell I could hardly function, not just joint pains, felt so unwell in myself.

I wasn't able to go straight back to my usual dose of MTX, instead I had to work up another tablet every month, so it took a very long time to get the flare under control, 5 months! I'm still suffering with bilateral achillies tendonitis, plantar fasciitis and bursitis in foot joints that started back at Christmas.

I've had a love hate relationship with MTX. Had many of the side effects and I also wondered whether living with the side effects was worse than living with Rheumatoid pain. This experience changed my mind! In my case the side effects are lessening over time and I'm feeling more my normal self. I'm still tired and don't have much go in me, but that is so much better than how I felt without the MTX.

I'd have a chat with your Rheumatologist. Maybe your Rheumatoid symptoms are not fully controlled and making you feel bad. It is a miserable disease. It might be you need your medication adjusted, or switch to another drug.

Best wishes.

[shell911]

I am there w/you.This is 2 Nd week of stopping Methotrexate and Nausea has lessened.

I was really sick w/an Infection last week and still have Respiratory Issues from it.

I am planning to talk w/Doctor when I go back in Sept. although I did message him on Patient Portal that I was stopping.

As far as how you are feeling , it may be combination of Meds and Disease , I just didn't feel like I need help feeling worse.

Good Luck to you

[halfpennyt]

Hi Pamak

I was on Methotrexate had to stop them because I had no life on it I was sick for 3 days after taking the 6 tabs on a Friday night getting up on Monday and trying to work dreading Friday. I was like this for 6 weeks not that long but I wanted my life back and wasn’t sure if I felt any better the dread of Friday coming round.

After talking to my RA nurse I had a few week with no drugs a lot of pain in my hips ankles and hands but less fear so feeling a lot better friends notice a big difference.

The RA nurse the but me on Sulfasalazine no problems the only side effect was I couldn’t sleep but as with the Methotrexate I had to get liver function test this always worried me as my sister has Alfa 1 a heredity liver problem after she was lucky enough to get a liver transplant I started to think why I’m I running a risk of damaging my liver.

My Nurse agreed to stop the sulfasalazine so far I have a lot of pains but trying to continue on with my life I will be going back to the nurse in December and may have to go back on the sulfasalazine swings and roundabouts what you gain in stopping the drugs comes back to you in pain it’s a hard to decide what to do so don’t do it lightly talk to the nurse and doctor remember they will help and support you when they can.

Best of luck whatever you decide.

[chronicstitcher]

Stop the drugs, risk permanent joint damage, or worse.

[bops2005]

It varies so much person to person. You have to do what you think is best for you as you have to live with yourself.

I stopped Plaquenil after been symptom free for 5 years and after 9 months I was hit big time with a flare and had much joint pain. Prednisone helped me get back on my feet whilst i waited 9 months for the plaquenil to work again and in that time the swelling never left my right wrist so now it has fused itself and doesn't bend at all!!! But i am now symptom free thanks to Plaquenil. Rheumatologist wanted me to take Methotrexate but I am symptom free without it!

Several rheumatologists say its an unusual. Pleased I can manage on just Plaquenil, bl_ _ dy shame about the wrist.

[JennyA123]

Sorry about all the pain.. I did stop all meds I tried so many different meds I was tired of all the side effects.. I'm now doing Accuponture ones a week and yes I'm still in pain but I fill better doing something that is not hurting my system you can ad your Dr . Good luck.

[MickeyJoints]

Hi, I stopped my drugs about a month ago and I wish I hadn't! I didn't think they were working as I was having pain and it seemed to slowly be getting worse.

Having stopped HCQ + LEF the pain has ramped up alarmingly! It was previously annoying and troublesome but now it's hindering me from doing much at all. Others here have it worse, but for me it's a new experience.

On the plus side, in terms of a controlled experiment, I have some definite results. I didn't have too many side effects and only an odd feeling on the day I took the MTX. Thankfully I have a rheumy appointment tomorrow so perhaps I can start the drugs again.

I guess what I'm saying is to be careful when you want to stop the drugs. This condition is so specific to each of us that it's hard to be sure what others report will be the same reaction you might have.

Joint erosion is happening as I type and the drugs help to reduce that, for the most part. It's a hard decision. I hope it works out ok for you, whatever your decision.

MJ

[Deminem in reply to MickeyJoints]

I had similar situ as MJ above. Very well put btw!

I stopped for 2 weeks. Was doing well on Enbrel for over 3 years and was changed to Benepali by NHS Docs for £ reasons. Did 6 months on Bene and felt so sick by the end I took myself off. Had my symptoms comeback after 2 weeks which was shocking.

What I learnt was my baseline. And that this disease doesn't just quietly go away, it's running in the background. For some reason I thought ah my AS won't be so bad anymore. I get you may think/feel that the drugs don't work, they just make it worse(as the song goes)but they are doing something In my experience anyway and that's all I can go by.

Sad truth is you lose years after dx just trying different meds and feeling crappy until you find one you vibe best with.

D

[MickeyJoints]

Hi D,

It's so easy to think, "this stuff isn't working so I'll stop!" and I guess it's the only way to find out if it's working or not.

The baseline idea I like! Yes, it's just sitting the chugging away quietly eroding... and it really is a 'vibe' as you say. I would think you get to know how your body is reacting and that adds to the mix of your impression of its efficacy - or not.

Starting back on HCQ at 400mg with amitriptyline added to help with the sleep as I've been waking up at 4 each morning. Always hot, sometimes drenched with sweat.

Diagnosis of osteo and an sero-negative inflammatory arthritis.

Oy vey.

MJ