Overwhelmed by the meds

Hi all I was finally diagnosed with RA in the summer. They immediately popped me on Mtx which they have just increased on top of the pred. At that point they said I needed to take folic acid and calcium for a deficiency. I've then had a dexa scan which shows osteoporosis so they put me on risedronate and vitamin D for a severe deficiency. On top of the 3 blood pressure tabs I currently take and my normal pain medication i am feeling so overwhelmed by all this. I know I need to take all this to feel better but I am only 32, I'm starting to feel depressed about it and how to manage all this which being a mum and holding my job down. God knows how I've managed to keep my job. I'm feel like a zombie atm :(

21 Replies

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  • Hi ouchyjenna

    I can relate to how you're feeling. At my worst, I was taking 28

    Tablets a day and weekly biologic injections. However, as things progressed, I got nearer to a better treatment plan and now I take a cocktail of tramadol, paracetamol, Mtx (20mg), folic acid, arcoxia and weekly biologic injection. It's still a lot , but not as much and to be fair, keeps me more mobile and in significantly less pain. It's just the currency for being able to have a better quality of life I guess?

    Keep your chin up and maybe chat to your gp / consultant and see if there's a more manageable drug regime for you?

    I wish you well on your journey.

  • Aw bless you. I can imagine how hard it is for you. Trying to raise a family, working on top of I'll health is hellish. I admire you for managing all that!

    I was diagnosed after my grown up son had already left home, so didn't have small children to look after. I was also made redundant from my job, so that solved that issue! I haven't managed to work since.

    Only do what you can, and if you have strong family and friends get them to burden some of the load. It may be that you will be on less meds eventually. In the mean time try not to overdo things. It's an exhausting illness, without all the added pressure we put on ourselves.

    Look after yourself

    Nettie

  • Aww thanks for your replies, I think I'm just exhausted at the moment and it hard to take in everything and it's a making me so emotional :(

  • Well if you're taking pred it's not surprising you're emotional. It turns me into a gibbering wreck, and my husband says he's going to stay with friends if I have to take it again.

    It is a lot to deal with at your young age, but hopefully it will all calm down and become more manageable. Try to look after yourself as well as everyone else, if only to reduce the number of blood pressure meds you take.

  • I have no scientific knowledge at all...but I agree prednisolone is the drug from hell.

    When I was first diagnosed & found the terrible affect it had I just told my Rheumy " No more" & he changed all my meds..but you do have to speak up early before you rely on it too much.

  • You're not kidding about prednisone being the drug from hell. I was unfortunate enought to have one of the rarest side effect...I heard voices, well only one voice....I had Jesus in my room talking to me...and I'm not even religeous....very strange indeed.

  • I became so anxious I would lie in bed in the morning & be so scared I couldn't get up...when I did eventually get out of bed I wouldn't know to do next.

    Occasionally I thought I heard someone singing.....I'd go downstairs to see if I'd left the radio on- but I never had!

    At first I didn't associate with Prednisolone as I was only taking a tiny dose....but eventually I just stopped it instinctively & within a short time I realised I was waking up without being too scared to get out of bed, & I heard no singing.

    When I mentioned it to the Rheumy I was seeing at the time he said Pred did have many unexplained side effects.

    I think it's used as a quick fix ....I certainly I wasn't given any warning to look out for any odd feelings/symptoms......I also think it's cheap!

  • So you heard singing and I heard Jesus. What a pair we are

    My husband knew I was scared as I hunted to look for Jesus in my closet. ( Crazy eh? Why would Jesus be in my closet? But I just knew he was)

    I was too scared to tell my hubby about the voice. Finally I told him. He told me to stop taking the prednisone and took me to the ER. I was mad at him because I was embarrassed about hearing Jesus and I thought I could trust my hubby to keep it a secret.

    At the ER, the doctors said they had only seen this side effect 2 times before within the last 10 years. I spent the night in the ER and the voice was gone by the morning.

    I'm glad my hubby noticed I was acting strange. If it wasn't for him...well...I'd still be in my closet searching.

  • I thought being so unsure of everything I was heading for dementia...then I pulled myself together & realised if I was losing it I probably wouldn't know & wouldn't be bothered!

    All my symptoms disappeared within days of stopping taking that dreadful drug.

    Hope you got all your water turned to wine before you stopped!!!

  • I should of said that the "crazy" voice hearing was an extremely rare side effect.

    Once your meds "kick in" you will be OK.

  • So hard at the beginning but it does get better. I have a pill box now - does help. And Pred made me very emotional BUT it did get me over a painful time till meds made an effect. Would not want to take again but never say never!

    Good luck

  • Oh my, you're no zombie you're amazing. Also so young - so let's hope that some more user friendly treatment will be discovered soon so that you will benefit .

    I feel so lucky that my RA didn't kick in when I was working and raising children. - the grandchildren are a joy, but they go home at night!! (usually)

  • I think I just need to get more organised, and try not to dwell on what I'm taking and just work on feeling better. I've had no side effects from the pred thank god because without it I wouldn be able to walk. I am having a really difficult time reducing the dose,when it ever the consultant try to reduce it it just brings on a flare so I have to increase it again

  • You sound like I was a few years ago, I think you have to decide if you want to carry on taking the tablets and being able to move or not taking them and not being able to do anything. I have been on steroids for 3 years, be it a small dose. And I to did not want to take any, but when I sat down and thought about them I preferred to take medication and try and have a reasonable life. I am nearly in remission. I was in my 50 is when I got told had RA and am still working. I think you do well with young children and working.i hate taking meds but for me to be able to work and have a life medication is the answer. We are lucky as we have the medication now where as maybe 30/40 years ago they had nothing.

    Take care and I wish you well.

    Carol x

  • Osteoporosis is reversible but there are far better products than the ones you are taking. You need to take calcium and vitamin C (natural, like fresh orange juice) with the vitamin D in order to absorb vitamin D - otherwise it won't help. A lot of people take these normally as a preventative measure - in fact, most of my friends so I can't see why it is causing you a problem.

    There are various ways you can reduce blood pressure - weight loss, exercise, not getting stressed. I don't see why you need prednisolone once the RA drugs are working. It did nothing for me and I am allergic to it.

  • At the moment I'm just following the advice of my rheumy. The mtx hasn't improved my pain to the extent where I feel like I can stop the the pred. However I think like you said improving my overall health is the key and getting some vitamins down my neck isn't going to hurt me. It's just alot to take in

  • Yes, follow the advice of your rheumy he's the expert. RA can be controlled. Oasteo is different from RA and it is not reversable but it can also be control. Once you find the right "cocktail" of meds you will be OK.

  • I am very sorry to know that at your very young age you have to take so many medicines. I was a very healthy person before and I did not take any medicine and no supplement too. Now I have to take about 7 different kinds of bills a day, I already feel it is too much to swallow. So I can feel how you feel really.

    As for prednisolone, I took a very small dose at the early stage for about 6 months and slowly I stopped it. I was lucky that I did not have any problem with it. I guess it is very much individual. When mtx starts to work on you, you can slowly stop that.

  • Hi ya, I've had RA since August 2010 and I'm only 34yrs. I was put on Methotrexate to start with but come off it over 6 months ago as was getting frequent mouth ulcers which is one of the side effects. I have RA in my knees & hands/wrists. When I was diagnosed with RA I felt scared to go out using my walking stick so I often would take my shopping trolley cause living on my own at the time I needed the trolley for the shopping also having RA too I can't carry anything heavy. A few months later I read in my local paper about a course called 'Challenging Arthritis' which I think Arthritis Uk ran so I signed up and found the course very useful. So after the course I thought to myself who cares what people think if I have my walking stick, I need it for support so who cares what people think. By doing the course my confidence grew. I've been put on Hydroxychloroquine now for my RA but for two weeks now I've had severe knee pain in my left knee and my GP put me on Tramadol with the Paracetamol that I already take. Because of my knee pain it has limited my mobility due to pain & had to be signed off work. Last Friday (30th December) I got the worst pain in my knee with like a twingy/crampy feeling in that leg. I had to ring my GP who then wanted to see me & then prescribed me with morphine, fembid forte (ibuprofen) gel with 2 weeks off work & a referral to see a physiotherapist. As you adjust to living with RA things will get easier, there maybe different things that could do but can't now as I found out when I was told I had RA

  • Dear Ouchyjenna. I do really feel for you. I was dx with Hashimotos in my early thirties, with young children, life was very difficult. It took about 18 months to get back on track. Developed Lupus/RA when I was forty was erosive, so many ops. I am 71 now , full time work until I was 60, many ups and downs, but have lived my my life alongside it. Gathered meds and added health problems. Have been on prednisone for 31 years, have ostoeoporosis, bp, glaucoma and osteoarthritis. My breakthrough was Humira a wonder drug for me. I feel blessed to have a wonderful close family and good friends. I don't know what life would be like without this decease, but I have had a good life. My RA is controlled.There are more advances in drugs for the future and when you have the right balance for you, you will feel more in control and positive. Wishing you well. X

  • Thank you so much for all your replys xx

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