Anyone else just fed up with their meds? Diagnosed with MCTD and inflammatory arthritis in 2020. Steroids were amazing but obviously can't stay on them and I think they affected my blood sugar. Methotrexate made my hair fallout. Now on mycophenolate which keeps causing my wcc to drop. I am still taking them at the min with a wwc of 3.4. My cholesterol is up so started on statins but realised that mycophenolate my be partly responsible for increase in cholesterol and that certain statins can cause muscle and joint pain. Also didn't realise that antidepressants are often given for chronic pain. I started them to help with menopause symptoms years ago (don't get me started on what menopause might be causing). I've been trying to wean myself off them but a worsening of my symptoms has stopped me. I don't know if it the statins or the antidepressants or menopause or MCTD that is increasing my pain....and oh! the fatigue. I know I need to speak to my GP and Rheumatologist but needed to vent and to get some validation that it's not just me that's so fed up with their meds. I feel like I want to stop them all and just start again. AND BREATHE!
Fed up with meds: Anyone else just fed up with their... - NRAS
Fed up with meds
even after 13 years I’m not completely reconciled to this - constantly having to think about making sure I take drugs, do blood tests, book appointments etc.. However last year I had a period where meds didn’t work and it was hell. So I’m appreciating them again!
True! When I have to come off mycophenolate fir any length of time, symptomsdo get worse. But just concerned that they are getting worse and I haven't even stopped them this time. I may gave to change drugsbe ausr of the wcc anyway but I'll see. Just very frustrating....Thanks for your reply. It helps to know other people have experienced the same. Cx
MTX made my hair fall out badly, along with the feeling of being on fire, so it was stopped for LEF which was brilliant for years. I’m now on AZA and Benapali so I don’t know about the other medications you have but do think you could ask about LEF. I’ve never been depressed so can’t comment on those medications but was prescribed Pregabalin for Shingles pain and I believe that can be used for multiple conditions. I never really think about taking medications except to be grateful and very happy that they enable me to live a nearly normal life with a condition that caused my mum to have such a lot of pain and disability. So perhaps it might be worth considering the positives which isn’t easy but a change of medication could really help you and you loose nothing by asking.
Thank you for the recommendations. A discussion does need to be had. Cx
Yes, yes, yes! Have had to take bucketloads of all sorts for over 34 years now and said to my rheumatologist last week that just for one day I would like to take NO DRUGS AT ALL!
I know I couldn’t do without them and thank my lucky stars that we have scientists and doctors who invent what we take and keep us reasonably fit and able but sometimes it all feels like too much especially when you hit the occasional brick wall and all fall down……..
I can completely sympathise with you - we all just drew the fuzzy end of the lollipop with RA and have to contend with so much and when it all works it’s great but now and again a good shriek helps no end so go ahead and I’m right behind you!
Thank you! I really did need the rant 🙃
Yes indeed, I'm fed up with my ever increasing repertoire of meds and still no great control over my RA.
Weary, weary, weary.
I just worked out that I take 7 different pills/ drugs a day , 8 on mtx jab day. All are for various reasons ( hbp, high cholesterol, hypothyroid and RA) . Which condition or drug caused what is a route I have tried to stop thinking about now after years of frustrating emotions. (let alone the menopause thing... ). For me its a redundant use of energy n mental resource and the frustration doesn't do me any good tbh. All the consultants etc I have asked said "luck of the draw" or similar as the reason a person with a healthy lifestyle gets things. I totally get why you need to vent and how you feel. Best wishes 🙂
Oh snap. From being someone fit, active and happy who hardly took anything I've turned into someone I hardly recognise. It's a total pain in the pinnie. However, I thank everything good that these meds are here because the lack of them would make life hideous. No, acceptance is not easy and I sympathise.
I know exactly how you feel. I've now got neuropathy in right leg so am on amiltriptyline (think that's how you spell it), a mild dose. It is working up to a point with the pain and helping me to sleep! As well as the usual mix of hydroxychlorequine, methotrexate and folic for hair. Good luck and take care.
For me, everything was much worse during menopause. It alone causes so many problems for some of us, others sail through those hormonal changes with virtually no symptoms and wonder what the problem is!
You really must go back to your team and maybe ask for a review.
One day, maybe there will be a team approach for those of us with complex health problems.
Yep! Bloody menopause....And still can't see that there's not a link to all these auto-immune disorders being more common in women at mid life. I'm not on HRT. At the time it was discussed I didn't want to 'pollute' my body with long term meds/hormones and their side effects. Well that's irony for you. 😄
Yep 100 percent I take so many and I still feel crap everyday 🙃 now the inflammation is back in my colon and I feel even worse. I sometimes wonder if anything will help
In an ideal world we wouldn't have to take meds but given that we do, I am extremely grateful for mine.
Oh dear! You've got a lot going on and a good rant is all we need sometimes to pull ourselves up. Sounds like you need a review of your meds. I take a shed load and not just for RA. I've had a gut problem for a year and diagnosed with a condition probably associated with RA and yet more tests to come. I guess that'll mean more meds. When I go away my meds now have their own suitcase😀 if you like chocolate have a bar and relax
I totally understand what you mean! I’m on about 30 tablets a day for all my issues, plus weekly injections of methotrexate! I keep wondering what would happen if I just stopped them all! (Of course I wouldn’t do that) but it gets so frustrating and I wonder what all the chemicals I put in my body are actually doing. We trust our doctors to know what the interactions are but do they actually take notice!
Hoping you can get some clarity from your GP and consultant 🤞🏻🤞🏻🤞🏻
I would love a day of no meds. I have over 25 meds on my repeat prescription, it feel’s ridiculous. However at present whilst I have serious leg pain, I’m grateful. I had a weeks course of 20mg prednisolone for serious bout of tendinitis of both the patella and quadriceps tendon. What i would give to be still taking that dose. I finished them on Saturday, and my pains are quickly escalating to the level I had 10 days ago, where it felt similar to childbirth pains, It has also highlighted the effects these meds can have on our system, as my liver function is up the creek, haven taken brufen and cocodamol regularly recently for pain. On the whole though they give us a better quality of life. 🤗
Yep! I can't take statins as they cause myopathy. My doc years ago said they were 'killing me' after doing a blood test. My body ached all over. Hubby had the same but he's now on his 3rd different statin and fine on them. I have to take fibrates to higher the good cholesterol to counteract the bad. I'm sick of running my life around the timing of my tablets! Can't take this one for 2 hours after that one, this one 4 hours after that one it's so tiring. But without them I'd be in a worse state that I am and that's not good. Meds to counteract the side affects of meds. It's a roller coaster! I try not to think too much about it now and resign myself but it's hard when you're used to being able to garden, decorate, go for long walks. And now you struggle to get out of bed. My rant over too. 🌹
To answer your question - yes, I’d love to stop taking my meds ( high blood pressure, asthma inhaler and hydroxychloroquine)
Years ago when I was being treated for Graves’ disease (autoimmune overactive thyroid) my cholesterol levels were the lowest I have ever had. At one point early on I was allowed to become hypo and once my treatment stopped and my TSH crept up because I was no longer so hyper my cholesterol increased to the extent I am always being offered statins but I think the way to lower my cholesterol would be to give me some thyroxine to get me euthyroid but that will never happen because my bloods fit ‘within the lab range’. That in itself is ridiculous because the lab range is massive. So it’s stalemate on that one.
I tried statins once years ago and felt really awful - that was before statins started getting ‘bad press’ so I had absolutely no knowledge of them other than how they were affecting my body - my muscles became so painful I could barely walk and I had always been a great walker yet suddenly my legs hurt so much I couldn’t walk across the road to the bus stop opposite our campsite when in the past we had always walked right into the town centre, as well as that I felt exhausted all the time.
I stopped them after a couple of weeks - my husband kept saying ‘don’t take them’ and I kept saying ‘but the doctor prescribed them for me’ - anyway, eventually I stopped them and fortunately went back to normal but apart from the muscle pains I found myself feeling really depressed which was horrible, I had the urge to curl up in a ball in the corner of our camper - I was on holiday when I started the statins.
I came home and after much digging around on the internet and I found that statins could cause depression. So I’m not surprised you are feeling awful. There’s a book called The Great Cholesterol Con by Dr Malcolm Kendrick that’s interesting ti read but I had made up my own mind years before I ever read it.
I can definitely relate to the hypothyroid problem. As long as TSH is in range they won't do anything and yet the NICE guidelines say that if people still have symptoms they should explore combination therapy. But it is down to individual ICBs and they can save money by restricting T4, and refusing T3 all together. And yes it must be costing extra money for cholesterol, high blood pressure and even diabetic drugs that could all be avoided if people had adequate treatment for their thyroid problems.
I found this really interesting. medscape.com/viewarticle/98...
My GP told me what to say when the usually its alocum tries to reduce my Thyroxine it is " I dont mean to interrupt you doctor but I'm a person, not a set of numbers. I'm absolutely fine, no palpitations and my dose is stable. I do not agree to you reducing it as you've normally only tested T3 and T4 ?? but it's the TSH which is wrong. So please talk to Dr ... or I will . And leave my medications alone as they should not be tinkered with based on a single blood test". That normally works. Often with laughter from the local and a that's me told then. ! x
Absolutely! Love this.My sister had to do the same because it was her TSH that was the issue.
Wow, that is impressive.
Yup my favourite GP I've known for 40 years when he started as trainee GP and he got cross when a young locum said I could not have 2 months supply of Thyroxine in case it was misused. I told my dr and he said it was because they way the new ones are taught in medical school. He wrote on my repeat list for 2 months and no issue since. He said it was enthusiasm over common sense. How can you abuse something if you risk death by not taking it? Hiarious ?? My GP has a great sense of humour and goodness what happens when he retires. Here the NHS only tests for T3 and T4 routinely so the TSH is a special request one and that caused the issue years ago. I said I was very tired but my bloods looked ok, again so tired so my GP did all three tests and the same day I got a phone call to double the thyroxine and its been fine ever since. I seem to recall the TSH was dangerously high.
Good grief! Yes! Thank you for this. It is very validating ......but informative too. I am grateful for the science but I think sometimes medics get tunnel vision and just concentrate on one specific thing at a time and not the whole person.
My GP got very concerned about my blood sugar at one point but I didn't really comply. I knew it was the steroids I was on and everything was fine once I stopped them.
I've always had a slightly high cholesterol (5.2) significant only because I'm fairly active and a vegetarian that doesn't eat a great deal of dairy. I also know that we tend to have high cholesterol in the family.
My cholesterol went up to 8 which surprised me. Statins have brought it down to 4.9 and I've been referred to a lipid clinic for investigations into family history etc. But I'm really suspicious of that jump in my cholesterol results especially as the statins seem to be having side effects too. If it is the immunosuppressant that is pushing my cholesterol up I may not have many alternatives but I'd just like to have that discussion.
I want to be active in my own health and health care. If I hadn't been I'd never have been diagnosed during the pandemic and been treated as early as I was.
Thanks fruitandnutcase for your support. It has been very helpful. Cx
Thank you for that article. It is interesting isn’t it.
No, when you think about it if people had their thyroid treated optimally then not only would they actually feel well, as opposed to struggling from day to day, it would surely reduce costs to the NHS.
As for combination therapy!!!!!! I don’t know if you use the Thyroid U.K. site on Healthunlocked but you’ll see from there how difficult it is to get T3 in any shape or form.
Fortunately I’m still in remission and I’m not having to fight off the threat of RAI.
It’s like listening to myself … even the menopause references lol! I don’t take any meds and as a result my fingers are worse but I after trying 3 different ones I was fed up with the side effects . I did start hrt ( waaay later than I should have ) and that’s going well but obviously doesn’t help the RA. I know that some people do well on these meds , but I’m afraid the horrible side effects and potential damage to organs was too much for me. I definitely have less fatigue and feel happier without them ( even the antidepressants) but you should make sure you take advice from the doctor about if/ how to come off anything to be on the safe side. Good luck !x
I am 69 and also since 29 years i have RA started at 40 had Enbrel for 14 yars developed cancer.After that Rituximab nothing and went into 4 mg of prednisone its going to be 9 years i am on pred have pains haf shingles left me with neuropatic pain for life.i have itu cronic for that i take antibiitic ciprofloxacine and i am not anymore on any biological.So my meds actually are 75mg of levotiroxine 4mg of pred vit c1mg and 500 ut of magnesium.Of course i am full of ostoporosis have also lung fibrosis never vaccinated for Covid or flew.I just dont beleive in meds any more.So i have become my own Dr.I THINK NOW A DAYS WE ARE NOT PATIENTS ANYMORE JUST NUMBERS AND MONEY.SORRY MY OPINION AFTER ALL MY EXPIERENCES.SORRY FOR MY INGLISH I AM FROM SOUTH AMERICA.
this is me at the moment as I know tomorrow the GP will say let’s add another medication and I am so over it all! 18meds and no end in sight and some I feel are making some things worse ie side effects . Poor GP is going to have to cope with the rant of medication tomorrow
My advice....write down your concerns. In a list. So that nothing gets missed and you can get individual answers or comments to each of your worries. Good luck. Cx
🙋 I'm fed up too
🤦♀️
Its going to be 29 years i havent found a Dr partner still i am a very difficult case i were myself to be a Dr probably thats why i am still alive anyhow hope you find your way out in this very difficult RA and we are not all the same what is goid for one not good for others.My best wishes for you xxx
I can completely empathise with you. Only yesterday I looked at all the tablets and felt like throwing them all in the bin. I've had to stop methotrexate as I developed a cough and joints are hurting even where I didn't think existed. I've had to increase steroids temporarily. While I've lost alot of hair on methotrexate, the joint pain is off the chart and at this point, I just want to be back on something.
BTW...I'm currently on duloxetine for depression and spinal stenosis pain...go figure.
Hope you are feeling a tad better today.
Gosh! I hope the steroids kick in soon. Cx
Yes. Totally fed up with RA meds & RA drs. Live in the USA. Have severe RA for 10 yrs. Some of the biologic & JAK meds cost $5-$10,000/mth. So even with RX insurance- co-pay is not affordable. TV advertising for big pharma profits.
There are US patient assistance programs but dr’s office is too lazy to do the paperwork.
A caring pharmacist finally intervened & got me a JAK inhibitor (discounted from manufacturer)- she kindly advocated for me or I would be dead.
The RA meds, dmards & biologics, made me sicker than the disease. Rituxan infusion immobilized me for 6 mths.
Had the JAK been prescribed after dmard & biologic failure- I would not have all this pain & joint damage. I was just told the copay would be $2,000/mth, which I could not afford, even with good medical insurance!
I’m afraid to suggest a new med to RA drs because they immediately write a script to save time.
New GP charged Medicare over $500 for 45 min visit- no hands on- just talk & bldwork. Bldwork was not included, it was billed separately.
LI am convinced most US medicine is callus & for profit. I’m totally discouraged. “First do no harm” is optional.
P.S. Last bldwork showed high cholesterol- dr asked me about me diet & exercise- when I got home, I looked it up & it is a side effect of my medication!
Totally hear you and feel the same. 30 years in and barely get a breather or any stability or consistency in RA. Have tried pretty much everything (as far as I know) low dose prednisone in the last 15 years (5mg) has been the only helper and proper pain relief, biologics failed as well as everything in between. Tried as my natural eastern medicine as well as western. Wish I could stay I had the magic formula….. but as many of you have said, I just try to focus on the positives and all the wonderful people trying to assist. But yes menopause is the pits, I understand it will be awesome once we get to the other side of the hot flushes and sleepless nights 
All the best xx
Awww I'm more fed up with the condition, RD than the meds which give me a quality of life rather than the terminal alternative.
It's a very hard road constantly motivating oneself to get up, keep doing what's needed, and adjusting each day to how you're feeling. I remind myself children have this condition and have to deal with the same, bless. On top of RD I have OA and in pain every day to varying degrees, constant pain is exhausting, plus side effects from meds so no wonder we're worn our physically and mentally.
The effect of all this on our mental health is I believe underestimated, though it has started to be looked into. I've referred myself a couple of times to mental health orgs and found it helpful to offload and got practical suggestions too. For me music, nature, ( I have a delightful blackbird comes to my door when it sees me for meal worms 😊) and family especially our grandson are the bright spots that keep me going.
Worse thing I find is how invisible you become to your former social circle once you're no longer able to do what you did, or keep up with them. I endeavour to stay in touch and there's always the couple of loyal ones, but generally wonder if I stopped getting touch how long before left to myself.
All hideous init? Some days I jut get through hour by hour, all the best. 🤗
Hi there! I'm just letting you know that I too have RA and osteoarthritis.... was put on statin 7 years ago and found medical studies proving statins cause diabetes and also dementia... so I asked docs to change those meds.. now on Ezetimide 10 mg daily for cholesterol and am pre-diabetic since statins and have kept my A1C below normal range. I worked as a wound care nurse so I know the horrible effects of diabetes and don't want to get them! I have chronic pain and yes depression goes hand in hand with chronic illnesses.. aren't we lucky?! Fatigue is horrible and my family doesn't understand last minute cancelations or how hard it is to commit to airplane ticket purchases or party plans. We all have a hard life dealing with our issues day in and day out..I just pray and laugh as often as I can... I hope you can do the same.. you are in my prayers for relief... take care ♥️🌹🙏🌹♥️
oh yes i think how things were before i took thing called RA and before i had to all the meds i have to take now and could go on holiday with no worries about meds.The latest one now is that i have been given Type 2 diabetes caused by steroids so more meds to take and another to add to insurance if i want to go abroad. So sorry for my rant.
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