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Had enough.. Not coping at all

Posted , 7 users are following.

Lisa_Batts
Lisa_Batts

Sorry to join this group on such a low note. A already have peripheral and cerebral neuropathies and for the past year have been treated also for PRA with MTX and Pred steroids. I decided to do 4 months of MTX and then try a month without it. This choice was taken away from me as I ended up in hospital after 8 weeks of infection and my doctors not taking it seriously so I had 6 weeks off MTX and by the end was begging to be on it again as the pain was so bad. However I was waiting for an appt with my rheumy to see if there was an alternative. Not for me apparently. Back on MTX and gradually coming off the steroids.

I am now virtually housebound. I get to go out about 2 hours a week and I've had enough. I am sitting here with joint pain so bad I'm just in tears. It's seems I'm damned on the MTX and damned off it.

We all talk about the side effects but I've never felt depressed like this. I'm fed up of being told how strong I am because all of a sudden I don't feel it. Please any kind words or somebody else who has felt like this please tell me I'm not going mad

Lisa

0 likes, 25 replies

25 Replies

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  • rainbow17330
    rainbow17330 Lisa_Batts

    Posted

    Hi Lisa

    I feel your pain; I have battled with severe widespread P all my life.  The athritis, nails, skin and scalp.   I stopped using the steroids and went to a homeopath which cleared it up completely twice; only returning after many years of stress and a poor diet.  Then I cleared it again by taking supplements: (D3 25ug, Omega 3 Fish Oil 4000mg  a day).  The results were miraculous.   They offered me MTX... but no chance!   I was horrified at that.   NO way.

    I have seen how severe and crippled people get when they take what the docs give them; utterly barbaric and worsens the immune system (which is ironic because that's the last thing we need).  Please please please stop these horrific meds and go see a homeopath/herbalist whatever.  And try the supplements, along with a few dietery changes SERIOUSLY it will work!!  Culprits to making it stay bad are salt, sugar, alcohol, smoking, red meat,  too much protein.   Go on a gentle slow cleanse.   But please get advice and help from the naturopath/homeopath because the steroids and meds will cause flare ups and healing crises.  Do NOT let this scare you... it is a sign that your body is clearing itself of the chemicals which needs to be done first.  Please... try it.  It saved me.   So many people dont listen and do what the docs suggest.  And end up in wheelchairs, wearing wigs, in pain, sore and miserable forever.  It will disable you if you continue these drugs...    I hope you will at least talk to a naturopath that's all I ask.   They will tell you.   xxx Hoping this changes at least one life. Fingers tightly crossed

    • Lisa_Batts
      Lisa_Batts rainbow17330

      Posted

      Dear Rainbow

      Thank you for taking the time to reply. It is months since I posted this post and in the meanwhile, second time round on MTX it is working so well in my PA and my side effects are minimal. Remember I had a period off the MTX and was begging to go back on it. I didn't realise how much it helped me. I have been on it again for months and only have my first infection last week, shingles brought on by stress... Who knows I wouldn't have got this not taking the MTX?

      For me, second time round I can't deny my PSA is far better than it has ever been 😊 I'm glad you have found a homeopathic route which works for you. That's brilliant 😊😊 however I would say that suggesting anybody to come off MTX and take supplements is not a wise suggestion. People on the MTX will end up possibly in wheelchairs etc but that is the disease rather than the meds. It can be a progressive illness. The MTX manages it. It is not a cure. Saying that I would love to jump off the MTX and go the homeopathic route but I think that is a huge gamble which could leave me in a far worse position than I am in now.

    • sheila65847
      sheila65847 Lisa_Batts

      Posted

      Hi Lisa,

      Happy New Year to you, Robert and all. I think I'm going to follow some of Rainbows suggestions but I'm too frightened to let the med go. Dietary suggestions are good and quite easy to adapt. I think dairy makes my condition worse but I love butter, cheese and cream! I'm going to add cod liver oil capsules too. I'm glad things are so much better for you now. When I restarted the Humira in July initially I felt much better but it ceased to work. My rheumatologist says that my body has develop antibodies to it following the 3 month break I had due to pneumonia. So I have just started the final drug available to me on the NHS, Stelara. I had my 1st injection on 22nd Dec, I'm not on any DMARD at present. In November I wanted to die, the pain and fatigue were overwhelming so I'm currently on steroids, what remarkable drugs they are but this is a stop gap until the Stelara kicks in. Pain in my hands, wrists and knees is very bad. II'm starting a programme of physio next week so hopefully that will help. There is so much fluid on my left knee I think my rheumatologist aspirate (again!! ) when I see him next week which will make me more comfortable. Best wishes to us all for 2016 xxx

    • Lisa_Batts
      Lisa_Batts sheila65847

      Posted

      Oh dear Sheila, my heart goes out to you and I have sent some positive thoughts your way. November must have been a terrible time. I've been there but always remind myself that it will pass.

      I have to admit my diet isn't great but the MTX and Sulfazine takes my appetite away completely so I go with what I fancy because I have lost a lot of weight due to lack of appetite so if I fancy it, I eat it 😊 I make sure I have a bowl of fresh fruit and a Greek/honey yoghurt every day but I'm not sure myself that my diet affects my PSA. I also think we go through enough Hell without worrying about what we eat, unless of course it does affect our PA. Steroids are great. I was on 30mg of prednisone and have weaned down to 2.5 mg a day. The only reason I haven't dropped them completely is because I have had a trauma to my left ankle which I have an appointment for in February to see if it needs surgery.

      I so hope the new drugs work for you. The swelling round the knees is awful. I use little pliable ice packs for mine when they do that and it really helps me. In an ideal world the homeopathic route sounds great but I, like you are scared to make that change. After all (and no disrespect to Rainbow) this is a chronic illness and I'm afraid that I don't believe it to be strong enough... Not in my case anyway. The meds are vile because the illness is chronic. Sure add supplements in (check with consultant first) but in addition not as a replacement. That of course is just my personal opinion.

      I wish you a better 2016 and don't forget if you have another November reach out and remember it passes

      Love from Lisa ☀️☀️X

  • sheila65847
    sheila65847 Lisa_Batts

    Posted

    Dear Lisa,

    thank you very much for responding. I was on 10mg of Pred which was fantastic, I felt like the old me again. I'm currently on 5mg and I cannot cope with the pain at all. I will be on to my GP on Monday. I'm going back to bed, it really is too much today, absolutely hellish. I will be in touch soon. Take care xxx

    • Lisa_Batts
      Lisa_Batts sheila65847

      Posted

      You poor thing. There are many things you can try so keep hope. Ask your doctor is you can up the steroids again if that helped. I don't know when you next see your consultant but you can't be left like this. Somethings not working for you and you need to find something that does. This is your life. There is no reason in this day and age to be in pain like you are. Change of PA meds I think you mentioned. I'm assuming MTX didn't work for you. There are injections you can have, there are also meds to go along with existing meds, steroids if they work can be upped and continued on. I actually got recommended to a member of my consultants team for pain management. Don't forget ice packs (such a little thing but so good). Also for Christmas I got a TENS machine which is especially for Arthritis pain management... I have to check with my consultant that I can use it but I will let you know how that goes. You really need to get an appointment with your consultant over and above your doctor and tell them how much pain you are in. There is something out there for you. Never give up hope, ever 😊😊

      I know you will be fatigued so don't you worry about replying to this if you don't feel up to it. I am sending you lots of positive vibes and wish you better Shiela. You are in my thoughts ☀️☀️☀️ X

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