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Choosing not to take medication

Posted , 36 users are following.

pepperpot33
pepperpot33

Hi I am newly diagnosed with RA.

Feeling bulldozed into taking medication with no other options offered.

My instinct says NO! it can't be the only option to poison my body in such a extreme way.

Has anybody else chose not to take the meds? and how do you feel ?

3 likes, 74 replies

74 Replies

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  • deborah67573
    deborah67573 pepperpot33

    Posted

    Hi there.

    Wow! That is very brave.  If I back track 17yrs I felt pretty much the same.  I didn't want to pour these poisons into my system either.  I was only 30, working full time with two very small children.

    However, as things progressed I realised how important these things were. The lack of mobility and awful pain caused by RA can be awful and I am determined to keep going. I am sat here recovering from one knee replacement and about to go into hospital for the other knee replacing.  This has occured even though I have taken the medication, although I wish I had been given Enbrel sooner and perhaps this could have been avoided.

    Of course it is your choice I I fully respect your decision, but RA can be all consuming. It's more often than not progressive and chronic in its nature and suddenly you find yourself immobile and in agony.  When my flare up was raging last year and my crps were over 150, I could literally feel the damage being done in my body.  Remember it doesn't just affect your joints; it can affect your main organs too.   The inflammation can be dangerous.

    I've taken the view that I have to take these pills and potions.  I don't like it at all, but they do help me live my life, work and look after my family (most of the time). I suppose you have to detach yourself from the possible bad effects and live for the good effects.  I live for the remissions.

    I hope you don't mind me stating this.  Of course there will be people with different experiences and herbal remedies and lifestyle changes will say different.  I have changed my lifestyle and enjoy a few herbal remedies myself, but for me, the formal medication plan is what keeps me moving.

    I completely understand how you feel and I hope that whatever decision you make, or the route you find through this illness, is a good one and you keep as healthy, mobile and happy as you can.

    Best wishes.

  • ama38049
    ama38049 pepperpot33

    Posted

    Hi Pepper, Yes I did this huge mistake for over a year, postponing starting biological treatment because of the side effects after over a decade of being treated for RA and then AS. RA progresses whether you want it or not. Medications do not revert it but merely stop or slow down the process. By not taking these you essentially get along with the disease. I hope that if you give it a chance, you will be treated with more conventional medications with less severe side effects. My advice would be – try and see. Feel if it helps. If it helps, go for it. If not, stop. Listen to your body.Sorry if this is not the answer that you wanted to hear...
  • pepperpot33
    pepperpot33

    Posted

    Thank-you! I will have a good think.

    Maybe as my symptoms are bearable at the momoment, I think I can handle it.

    Next  week I may be back at the Doc's begging for anything.

    Is Embrel better than Mex 

  • Kathryn1111
    Kathryn1111 pepperpot33

    Posted

    I totally hear what you are saying, its one of the hardest tings to come to terms with the thought of taking meds like these for potentially the rest of your life!

    I can only speak from my own experience, I was diagnosed with RA at age 30 (im now 39) I chose to take Sulfizalizine which was offered at the time or Methotrexate, I was dead against Metx because of the potential side effects and the fact I was still of child bearing age, and the thought of accidentally getting pegnant while on meth doesn't bare thinking about, plus the constant check ups and blood tests put me off that option too.

    I stayed on sulf for 7 years with no problems at all then decided to change meds to antibiotics (minocin) I took this for 18 months and came off all meds 18 months ago and am now medication free!

    I have had 2 major flare ups in all those years one at the beginning which got me on the stuff in the first palce and one just before coming of the antibiotics, so ive been lucky in that respect as some people suffer terribly.

    I guess what im saying is for me i'd take the meds that are right for you until you get back on track then consider changing or reducing when you can? If you go into this with that in mind it might make the thought of taking these medications a bit easier to bare?, don't beat yourself up. Everyone is different and whats right for one is not always right for another.

    Good luck,

    Kat x

  • pepperpot33
    pepperpot33

    Posted

    Thanks Kat

    That makes me feel abit more positive 

  • carol57369
    carol57369 pepperpot33

    Posted

    hello i was put on  Sulfizalizine  i have taken it since last january  my blood pressure went so high on this my rumy specialist took me off it and now given me prednisone which i have not yet started taking thatas my choice beccause of side effects no one can tell you what to do must be your choice but take care 

    carol

  • pepperpot33
    pepperpot33

    Posted

    It looks like all of the medication you are offered have alot of side effects.

    I have started a acid free diet , no wheat, dairy, meat,sugar or coffee and have started taking Krill oil and mineral suplements.

    I don't know if it is helping but anything is worth a go

    • Light
      Light pepperpot33

      Posted

      By the way, your low acid (not acid free I hope, that could be dangerous in itself) 'no wheat, dairy, meat, sugar or coffee' diet certainly won't hurt you, although there is evidence recently that coffee has a lot to offer (stick a pinch of bicarbonate of soda in it to cut its acidity – so my nutritionist told me!).

      Krill oil is brill – Krill is brill!

      Astaxanthine is the latest supplement of choice. If you are really meat free, good to keep some fish in your diet, tinned sardines for eg.

      You weight is important though. A heavy body is very hard on the joints. Losing weight is probably the first thing an RA sufferer should do.

      Just sayin'...

       

    • pepperpot33
      pepperpot33 Light

      Posted

      Hi Light 

      I have only just noticed this post!

      I think following a low acid diet really makes sense, but I must admit it is hard.

      I haven't eaten meat for 35 years but I do eat fish and stopping all wheat has revealed a perfect flat belly(something I never thought would happen)

      But I do find myself thinking alot about french sticks!

    • penny55083
      penny55083 pepperpot33

      Posted

      Hi there, I am 4-5 years down the line from diagnosis. I have been on methotrexate since the begining. It was an easy decision to make for me because I couldn't have carried on with life as I was. I did alot of research then and I understood that there was a window of opportunity within a few months to be treated with DIMARDS and if treated within that window then the disease process could be slowed or abhorted. My methotrexate was ramped up quickly to 17.5mg weekly and it was taken with daily prednisolone. I was very reluctant to take such strong drugs but I was assured that the best course was early aggressive treatment. My liver enzymes ALT spike occasionally but I no longer require any steroid and I take 10mg of methotrexate weekly and as long as I stick to a low sugar healthy diet and exercise regularly I have very few problems. I'm a health professional and still working.  When I first qualified 35 years ago RA patients used to come in for heat treatment in wheelchairs, neck braces, with knarled hands and surgical shoes. It was a cruel disease. Since the new medications have been available we don't see them at all. The doctors are paid to be experts, they do all the reading of the latest research and advise us accordingly. They often don't get it right first time and may need to tinker with the type of drug or dose to find something that suits you. My advice is to get the disease under control then experiment with diets etc. you will have plenty of time to try. 
    • Rowbirdie
      Rowbirdie penny55083

      Posted

      This is a very important point. I d forgotten about ' the window of opportunity' and you are completely right. The NICE guidelines say early diagnosis and aggressive treatment. I was put onto a biologic within 9 months of diagnosis as my symptoms were not improving even with 3 types of disease modifying medication ,and that has made a huge difference to my life. This disease is painful and destructive if not held back.
    • pepperpot33
      pepperpot33 penny55083

      Posted

      Hi penny

      Thanks for sharing your knowledge and advice, 

      I know what you are saying and what ever drugs i take , i won't leave it too late, but I do need to explore.

      When I was in the clinic waiting room this week , I was really shocked at how many people had deformaties of the hands and limping as they were all quite young.

      Best wishes

    • penny55083
      penny55083 pepperpot33

      Posted

      Can I ask which part of the world you live in? I have been sitting in many rheumatology waiting rooms in the uk and I can only say that my experience is different. Limping yes, swollen joints yes; the result of acute disease, but not deformity as in the old days. I realised before diagnosis that the levels of inflammation could be varied by what I ate but I couldn't eliminate the symptoms completely. Now the more I exercise the better I am. The research shows that someone with RA who does a progressive weight strengthening programme is stronger at 70 or 80 than someone of a similar age who hasn't got the disease. The problem is that exercising with active disease is not advised and I certainly couldn't have done it. Hence, get the disease quickly under control, with drugs, then you can get on with life. There are risk factors in taking strong medication but with correct monitoring any side effects can be quickly dealt with. However, there is also a risk in not taking them. Google John Hopkins Hospital site in the US and search for RA. There is lots of evidence based information on there. I hope I don't sound too forceful but having RA is a steep learning curve and the more good quality information available to you the better prepared you will be. 
  • Rowbirdie
    Rowbirdie pepperpot33

    Posted

    Hi

    How much are your joints affected by pain / swelling? How long have you had symptoms?

    i was so bad at diagnosis I went with the standard treatment, methotrexate which people are concerned about when they hear it is also used as a chemo drug for cancer( but at much higher 10x dose) Similarly  to another post I am now on a biologic drug similar to enbrel plus 2 others! This is because my  RA was consistently very active.But it has brought normality to my life again since my diagnosis 18 months ago.There is a list of possible side effects but my need was so great I just bit the bullet and don't regret it. But I understand how you feel as before that I had never needed a dr or been in hospital apart from having babies.

    But if the symptoms are a lot milder , as you ve heard from other posts, they may well be controlled by diet, or sulphasalazine .let s hope that s the case but don't be afraid of the meds if it becomes necessary as early diagnosis and aggressive treatment can hold back / slow downdisease activity .

    Either way it is a hard thing to come to terms with . Getting informed by reading NRAS website , especially about fatigue and exercise helped me feel less out of control and more able to come to terms with everything.

    Your consultant will have done X-rays to see if any changes in your joints and this might help you know if now s the time for more aggressive treatment .

    I do wish you all the best as you begin this journey- you ll see everyone s experience is slightly different which is so helpful on this website.

     

    • pepperpot33
      pepperpot33 Rowbirdie

      Posted

      Hi  Rowbirdie

      I was diagnosed six weeks ago, but I suspected I had RA for about six months.

      At the moment only my hands are affected, swollen and very painful.

      I haven't been told yet if I am seron pos or neg,  I had my first consultation a week ago and she wants to put me on Methotrexate and hydroxychloroquine and treat it aggressively.

      I am back again tomorrow for results and to start taking meds, but I think I need abit more time to learn about my illness and side effects before I start on the med trail.

      It helps so much talking to people with invaluable experience which talking to your Dr or reading  medical books doesn't give you!

      Thanks everyone x 

       

    • Rowbirdie
      Rowbirdie pepperpot33

      Posted

      Hi pepperpot

      do ask them lots of questions at your consultation.( jot them down) Can you take someone with you? It s all so new I found it hard to remember what had been said to me ( but I am a lot older than you so may not be relevent!)

      They are used to people having to adjust to the diagnosis. So will give you time even though you get the sense you just have a short slot.. If you decide not to follow their medication advice right now you need to know what happens next. But some of the results may persuade you to go for the methx.

    • Light
      Light Rowbirdie

      Posted

      I heartily support Rowbirdie's suggestion to take a friend, especialy on your first rheumy visit. And ideally get them to take notes.

      The more you consult with them together with your rheumy the more space you give yourself to take it all in and go over it before it's too late and you find yourself in the clinic corridor with the door shut behind you, wishing you'd asked this... and that.

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