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I HAVE PSORIASIS AND PSORIATIC ARTHRITIS AND ALL THAT COMES WITH IT!!

Posted , 6 users are following.

mumma58
mumma58

hello  yes it is very important  to get proper diagnosis  and  early  detection is the key!   to get on  auto immune suppressant drugs to slow down the  progression  and  help with severe pain!

If  a person  chooses not to go the  drug  route  thats there choice!

yes some  side effects are very unpleasant  just ask me  methotrexate  yuk

but as long as your blood is monitored regular  thats a good thing!

ive weined myself off the  drugs  at  times  because i didnt like the side effects  but what was worse  was the extreme flare up pain  engulfing my whole body to the point  i couldnt  stand it!  I  think id much rather take the drugs   than end up in a wheelchair   Some quality of life  is  better!!

thankyou  

 

4 likes, 14 replies

14 Replies

  • hope4cure
    hope4cure mumma58

    Posted

    U have been thru a lot. UR story is sad and p. Is a terribly dibilitating disease.

    there r other drugs u could try perhaps side effects will not effect u as much as MTX.

    ask UR rhumy for other meds. So sorry to hear the pain u endured. It's never a good idea to stop abruptly . I have have PSA and p for many years it always a hit or miss on meds. I have experiences the issues u have with MTX. 

    U won't end up in a wheel chair this can be monitored for a better quality of life .

    CHEERS

    HOPE

     

  • CA-Lynn
    CA-Lynn mumma58

    Posted

    People should look into DMARDS and biologics as they can give you your life back. The vast majority of people who take them are enjoying their lives and not posting here. True, DMARDS may cause some side effects in some people [not all] but it's a small price to pay.
    • hope4cure
      hope4cure CA-Lynn

      Posted

      DMARDS helped me so much at first then made me so ill from the side effects ..doc took me off DMARDS.

       There r different effects. They shut down the immune system stopping the lL-17-lL-23 proteins & antibodies from attacking the body and causing irreversible damage to the joints. After the first three loading doses of bios the objective is to stop the pain and joint damage. When the drug no longer helps or stopped the disease regains it normal course.

      The other objective is to weigh the side effects of bio drugs with the quality of life issue.

      Basically I get how they work.. everyone has that choice if necessary.

      Just on the fence right now on bios.

      Cheers

  • david60784
    david60784 mumma58

    Posted

    Methotrexate , methosoralan, tickerson etc SORRY about spelling I have been on them ALL Consultants  want to put you on them it makes good stats The side effects for each person can be VERY unpleasant. Go into hospital OR day care  some hospitals treat you in the evenings ), DO NOT be forced to take tablets. The quality of our lives is important. PLEASE support me
    • hope4cure
      hope4cure david60784

      Posted

      Side de effects can be more than just unpleasant....some cause rare blood cancers and heart failure.. Drugs today r very potent and take extra precaution for the patients to know & understand all the side effects and statistics from the clinical studies.

      I'm  still on the fence. cool

    • cat_lady_66
      cat_lady_66 david60784

      Posted

      I do agree with your comments about our medications, but I have taken methotrexate for 14 years and inject once a week, I am own thinking about my next vist in Sep to see the consultant as to where do we go from here, I not sure I want to continue re: side effects and what it is doing to the body -May be join you on the fence?
  • cat_lady_66
    cat_lady_66 mumma58

    Posted

    I too have psoriatic arthritis and all that it brings and have had this for 15 years plus. I think your advice is the same as mine, take the Meds offered, try and deal with the side effects - not always possible I know - rest on the bad days and spread out the good days, by doing s few jobs each day. Go out meet friends have a reasonable time, even a good time when you can.  I some times do ALl my tasks on the same day, everything is complete and then you can really rest without the guilt 
    • hope4cure
      hope4cure cat_lady_66

      Posted

      I agree learn our limitations and be mindful of our mobility issues take it slow easy.. some days it takes more time and pain management.

      i do quite well on OTC meds. At this time. 

      CHEERS

  • cat_lady_66
    cat_lady_66 mumma58

    Posted

    I would be grateful for any help or tips you may have.  It is a very strange illness to cope with and I also have PMR polymialgia rhuematica but I am informed that this is very unusual to have both of these 
  • david60784
    david60784 mumma58

    Posted

    Hi

    I was clear of psoriasis 12 weeks ago it came back with a vengence Have no choice surgeon will not treat me until I go on injections.

    Im in uk

    • hope4cure
      hope4cure david60784

      Posted

      Hi David ,

      I have had psoriasis all my life.. It's a pain to cope with.. Did u come off any meds  ...sometimes when meds especially bios  an explosion sort of takes over... Bios Help suppress the immune system... Stops the P. Then when meds r stopped it comes back even worse because the immune system is raging over producing skin cells. Ll-17 and Ll-23 protein cells that were suppressed.

      Try occlusion.also try my recipe. Pour in spay bottle 50/50 mix alcohol free witch hazel an anti inflam with glycerin .shake well spray on P. Will stop itching.  Glycerin is in the skin naturally.

      Also many P. OTC  products with coal tar really shuts the production of skin down .. Within two weeks u will be in remission or on UR way to remission.. 

      Use OTC coal tar products for skin over night occlusion it's in shampoos & skin care creams for P.  available at any pharmacy. 

      Also when the sun is low sun it UR best friend for vitamin D and light therapy and laser therapy. O not burn sun bathe wen sun is low on the horizon. Sometimes it takes a combination.. Light therapy with TOPICALS..like steroid creams used alternately with coal tar creams with occlusion in tiny amounts. Depending on what % of UR body is covered with P. Keep it simple . 

      Give it a try and promise to be consistant with treatment...stick to it ... U will see recovery and remission...

      CHEERS

  • david60784
    david60784 mumma58

    Posted

    Hi ALL

    I am again having treatment straight from work mon - friday and sat sun.

    But have voluntared to go on injections. Also putting going for chest x-ray and  numerous blood tests have really annoyed the consultant, I said to a nurse one day when I was really fed up with his atitude ( he is a WITCH DOCTOR thats ALL ). We should not be made to suffer on tablets etc.

    We need to support each other.

     

  • RachelPPSA91
    RachelPPSA91 mumma58

    Posted

    I have PPP, NP & PA (Feet & Hands) and been a sufferer of this since January 2014. I've been on multiple medications for this (Yesterday i started Methotrexate with no previous prevail)

    I am a current wheelchair user and feel the burden of not being able to do a thing to stop this but I know i have to get on with it. I can't bathe myself or wash my own hair (My partner helps me with that), Yes it causes a lot of stress, Depression and other elements but I always try to talk to others to calm myself down and open up. 

    I've had a horrible year so far and I only hope and wish that the MTX will work!

    I hope all get relief at some point in time smile 

  • debbi0140
    debbi0140 mumma58

    Posted

    I personally agree with you and after trying different types am on Enbrel. My son who has Ankylosing spondylitis chose not to go on any bio med due to having a cancer scare when he was 16 and on remicade. He remains under doctor care to keep an eye on his lymph nodes. He decided to go back on a bio med however he is now mostly fused. It does seem to still help with his pain.
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