Forums


General Discussions

looking to share my story and gain opinions from other sufferers

  • By kvirg

    Hello

    My name is Katie – I’m a 32 year old working mother of 2 young kids. I’ve had psoriasis since I was about 12 and psoriatic arthritis symptoms worsening probably over the last 5 years but only diagnosed 2 months ago.
    I recently tried methotrexate as per the rheumatologist (10mg per week then up to 20mg) and I found the side effects dreadful (nausea, increase abdo pain and bloating, fatigue)and leaving me unable to do what I needed for my family. I stopped it and was told to wait until my next appointment 2 months away.
    I’ve tried removing all refined carbs from my diet which moderately helped with inflammation.
    Does anyone here have experience with a paleo or keto diet and it helping?

    Also I’m quiet nervous about being offered a new medication next visit as I really hated methotrexate that much.. I can’t decide if the affected joint pain is swelling is better to live with or trying a biologic or something else.. I’m on my 3rd new joint flare up of the last year. How do you all decide what to try and what to suggest to your doctors??

    Thanks 🙂

    Reply Created with Sketch. reply
  • By dashaway

    I have personally gotten a lot of relief with diet changes – mostly getting rid of dairy and meat. I tried the Whole 30 but couldn’t get through it. I think the big thing I worry about is just preventing any more long term joint damage than I already have. I’ve honestly been just asking people in the FB groups I’m in about what they are doing but a lot of it for me comes down to what my insurance will cover 🙁

    Reply Created with Sketch. reply
  • By smidge64

    I completely understand your comments about Methatrexate side effects, I have wondered if living with the joint pain and restricted movement with a clear head would be preferable.

    I am worried about joint damage, I was diagnosed last October having started Arthritis symptoms in the August, in that time my finger joints have permanent damage ( locked)
    so am pursuing options with biologics.

    While waiting for next appt have been using a tens machine to relieve pain, this has helped me and does not add to the long list of meds

    Reply Created with Sketch. reply
  • By Sheeva77

    My doctor had me on Methotrexate and Prednisone for 2 years straight hit shredded my stomach so bad I couldn’t eat solids for about 3 months not a good way to lose weight or Diet LOL it sucked. I was happy to lose the weight but I wasn’t happy being sick all the time one thing that I have found that works better than pills is injections whether it would be ones that you do for yourself or ones that you get done at the clinic they don’t attack your stomach as much or at all like the pills do. I would talk to your doctor about seeing if injections would work for you. I’ve had this for roughly 7 years he Humira worked well. It came in a EpiPen looking thing and it kind of hurt to do but the pan was definitely worth it helped my doctor switched me off that to a weaker Med which it wasn’t working and then he moved the current doctor that I’m seeing right now actually has psoriatic arthritis his is in St Paul Rheumatology in Roseville. I definitely recommend him to anybody that isnt happy with their rheumatologist or anyone looking for a rheumatologist. I don’t remember his name but there’s only two doctors I think at that clinic and there’s only one guy and that guy is the one I see. I wish you luck the other thing that has helped with some of the pain is getting into a pain clinic if you’re okay taking narcotics otherwise one that helps me now and I’m off of Narcotics is I got my cannabis card and that really seems to help and it’s more natural

    Reply Created with Sketch. reply
  • By kvirg

    Thank you all for the input.

    Basically the whole thing sounds like finding a tailored plan for each individual..

    I worry about the joint damage too.. with every new joint I seem to get severe tendinitis first (red, swollen, tender) for 2-3 weeks before I feel it settle into the joint. One of my toes is for sure locked at this point.

    I’ve never been a real naturopath type person but these drugs scare me especially after my experience..

    I guess it’s trial and error.
    I’m currently giving a ketogenic diet a try while I wait for my appointment – I figure it can’t hurt to try. No change in the first 2 weeks though.

    Reply Created with Sketch. reply
  • By kvirg

    Hello again,

    I just had a follow up with the rhematologist and I’m feeling so discouraged.

    I have been following the keto diet for just under 5 weeks and I do feel improvements for sure. Weight loss and less foot pain.

    However, the doc believes especially because I have dactylitis in my toes, treatment is important.

    She gave me the option to try sulfasalazine first and if I wanted to – try Humira after. She said there is a chance I would tolerate the sulfa even though I didn’t tolerate the MTX.
    She assured me both were “safe” but a quick google search is very scary.

    I asked her as some of you mentioned, about CBD oil and she said it’s just a bandaid solution with no real evidence of support (just saying what I was told).

    I feel so discouraged as I do not want to take any of these drugs and I’m just not sure what to do.

    I would say the diet alone takes my pain from 6/10 to 3/10 (maybe even less through out the day) but am I risking permanent damage? But what about the med side effects?

    Has anyone taken either of these drugs into remission??? and then come off them??

    Thanks for reading.

    Reply Created with Sketch. reply
  • By Rebecca Keymaster

    Hi kvirg,
    I am so glad you posted – you are definitely not alone in feeling this way, particularly about treatment. While only you can weigh the risk/benefit of medications (or of not using conventional treatment), hearing about other peoples’ experiences can help ease your mind.

    While I’m not a qualified medical professional and I am not up to date on the CBD oil research, I would encourage you to keep exploring your options and continue advocating for yourself. Remember, you know your body. If you think you’d benefit from a second opinion, consider getting one.

    In the meantime, our contributor Cynthia (https://psoriatic-arthritis.com/community/experts/cynthia-covert/) has lots of experience in this area! I’ll see if I can grab her to chime in. You can find her articles on CBD, alternative treatment, etc. here: https://psoriatic-arthritis.com/author/CynthiaC/

    Reply Created with Sketch. reply
    • By Cynthia Covert

      Hi Katie,
      Cynthia here…. like Rebecca I am not a medical professional and cannot advise you on treatment. However, I can share my experience and how I managed to decrease my pain and inflammation… I do use CBD, but I also use THC. I need both. I also have to play around by switching strains to address the pains that are bothering me the most. With that said, CBD and THC alone aren’t fully responsible for my significant decrease in pain and inflammation. I combine them with PEMF therapy (pulsed electromagnetic fields). You can google it or check out my personal blog where I talk a lot about it. Diet and exercise are also a big part of my pain management plan. But that is it. I stopped treating PsA and my other chronic illnesses with pharmaceutical medications 6 years ago and have been treating them naturally and alternately. Although I have had great success, I can’t say whether it is right for you or not.

      Reply Created with Sketch. reply
  • By sarahr

    Hi Katie, my psoriasis history is similar to yours. I’ve had psoriasis since age 11 and PsA for about 16 years. Initially it affected my hands and feet, fingers and toes plus the odd large joint flaring now and then. My 1st NSAID was Sulf longterm gradually upping the dose until it became ineffective (& my wee glowed in the dark!) then I briefly tried MTX and lef which both really disagreed with me. I’ve been on Humira for the last 9 years and I wouldn’t be over the top in saying it gave me my life back. I’ve had two breaks from it to have my children and apart from one nasty but of flu hitting me hard I have had no bad experiences so far with the medication. I’ve been able to go back to work and stay mobile and be the active mom I never thought I’d be able to be. I took a lot of time doing my own research into humira and biologics in general before I decided it was worth a trial and I’d always advise anyone to do the same

    Reply Created with Sketch. reply
  • By kvirg

    I would just like to add / update..

    My family doctor more gently explained why she believes treatment is important in avoiding a flare that ends in permanent damage. She shared she has many patients on Humira with little to no side effects.. and also the important in prevention of future issues. So that had me thinking of trying..

    Then, I saw a naturopath today. I went in slightly guarded but with an open mind also. She does not love keto and has suggested trying a “paleo autoimmune diet” .. it’s also very restrictive (no processed carbs, no dairy, eggs, nuts..). She is a naturopath who is not anti-drug and said I could try what she suggested and it would also work with sulphasalazine if I wanted..

    I think I’m going to give the diet and the couple supplements a try for a while and see how I feel and perhaps if I don’t feel enough of a shift will try the sulpha. in a few weeks..

    (Also – the 6 weeks of keto has helped me with a slow and steady weight loss and has removed my body pain except for my feet.. which maybe went from a 6-7/10 pain in the morning to a 4-5/10)

    Reply Created with Sketch. reply