Nervous!!!

Nervous!!!

So I have Uveitis with a non specified auto immune disease. They have literally tested for everything that it can possibly he and even some things that it probably shouldn't be. Alas everything is showing absolutely nothing. Other than the flares in my eyes that literally could blind me. I've been on acthar injections (specifically for my Uveitis) and it's helped but my flares have still been popping up and in the last few months very very severe. So my Rheumatologist decided the methotrexate is best. I'm starting at an intermediate injectable dose. He didn't want to start very low as my flares are getting to the point where I could just wake up blinds due to extremely high pressures (they said that clinic has never seen pressures so high) and saying that i was very lucky/blessed to still have my vision.

So starting at a decent dose not so low is a better option. I start tomorrow and I'm not gunna lie, I'm super nervous. I want to be smartly prepared but also not scare myself stupid. I really don't care about losing my hair, if I do I'll cut it all off. I'm not really worried about losing my voice, tho that would be more upsetting than my hair. I'm not terribly worried about gaining or losing weight, tho the losing wouldn't be horrible ;-).

What I am nervous about is the unknown, if I will get sick, if I'll have the energy to coach soccer for my kids or run my son around to his "too numerous" to count medical appointments. And the. Lightly how I will take action against all the afore mentioned worries/concerns.

I'm looking forward to having a network of people that can give me advice and just support. :-)

13 Replies

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  • My methotrexate is my best friend. It keeps me normal and able to live a normal life. And I have no side effects now, apart from being slightly tired the day after. I inject on Tuesday night and try to arrange that I can have an extra hour in bed the next morning, and nothing too mentally challenging that day. And that's it.

    So don't anticipate the worst. Most people get on fine with it. Forums like these tend to emphasise the problems as people on post when things are bad. I never post saying "I've had another good week..." as that would be dull as well as miserable for those who are having a rubbish week.

  • Hi - I'm sorry to hear that your health is wobbly at the moment; hopefully the mtx will help to stabilise it. Apart from feeling a little nauseous after the first few doses I've been ok with methotrexate. I also have the injections (which are no bother to self-inject) now but started with tablets. Good luck with everything. It sounds like your family keep you on your toes so rest up when you can!

  • I would agree with everything Helixhelix says. I was nervous about taking methotrexate but it really hasn't been the big deal I feared it would be. That said as I sit here writing this, post last nights injection, I know I've had it and so timing is important. Pick a day when you can have a slightly quieter day - maybe not coaching football (!) and then pace yourself according to how you feel. Although I'll feel a bit rough today it's also a day when I lessen what I ask of myself and slow down and that's got to be a positive 😊 Best of luck with it x

  • How very scary for you - the eye problem, not the methotrexate. As others have said, I was so reluctant to start it but it has worked so well for me that now I would be frightened to stop it. I have it by injection and have little appetite the next day, but apart from that haven't had problems with it..

    I hope it works for you.

  • I have found Methotrexate to be very effective in helping to hold my RD at bay. But as others have said plan to have a restful day after administering the dose , I can feel tired and washed out sometimes on the day following the injection but on other occasions I feel fine. Also try and drink plenty on the day of the injection and the day following it does help.

  • Thanks so much for replying guys, and you right I have read until I think my eyes will pop out. I am also in the medical field, which is part of my preparing.

    I love hearing the positives and my first injection is today and I have nothing tomorrow that is pressing so I can just rest. Honestly, I just really want to get it over with so I can see what it will be like for me. I do still have soccer tonight.

    Anyway I'll let you guys know! Again I'm grateful for a place of support!

  • Hi Mrsrkendall,

    It's lovely to meet you, this is indeed a great place for support, in fact I don't know what I would have done without these people when I was first diagnosed (a year ago now)

    I've got Psoriatic Arthritis, and Uveitis as well. I'm also HLA B27 positive - did they do that test for you?

    My Uveitis has proven to be my worst issue and I'm now on Humira. I will PM you with more but I think I can say I totally understand where you are and sympathise hugely. If you are on Facebook theres a fantastic private group you can join too. facebook.com/search/top/?q=...🌎(intermediate%2Canterior%2Cposterior%2Cbilateral)

    Best wishes and I will message you too x

  • Thanks so much!!! And yes they've tested for that. I go the only specialist in the state for my eyes and I still have the stumped. One on why I still see close to 20/20 and because literally nothing is showing in the 170 different blood tests they've looked into. I know it's frustrating for them because it is for me. They have told me with confidence that, "eventually what I have will rear it's head in an ugly way and shown up in the blood work". I've actually been having flares ups for around 5 years. It wasn't until last year that my local doc gave me a diagnosis and told me that I absolutely had to see a specialist because no one in my area knows what to do or test for.

    I will say that I've reached out to my first cousin for some information on my Aunt. She had a rare form of lupus and a rare form of RA and even was used in medical journals in the late 70's and early 80's. I'm hoping he can just give me some names tho I was honestly more involved in some of her care than he was at times. She passed at 54. I had one and marker show up as a teen while i had mono. And ever since nothing at all is showing up.

    I look forward to your pm

  • Hi,

    My MTX is doing the job of keeping things under control very well thank you and hopefully it will do the trick for you. I'm on tablet form 20mg with 5mg of folic acid once a week taken 3 days after the MTX.

    Other things that may or may not help reduce the inflammation are cut out refined sugars, add turmeric to your diet (as a powder added to soups, stews, salad dressings etc or supplement form - it works best with black pepper as this helps release the 'goodies' in the turmeric so as a powder is best or better still is buying the root and cutting that up - it's nice added to mashed sweet potatoes and parsnip but will leave your chopping board stained yellow!). Some people find reducing their gluten and dairy intake helps. I find potatoes and tomatoes up my inflammation so avoid these though a little now and again seems ok.

    All the best

    Ali

  • Hi, I don't suppose it is any help but I got chronic posterior uveitis in both eyes when I was 35. I was treated with Prednisolone, (injections into eyes and tablets,) for years and years. I am 64, my son, who was a disabled five year old when I originally got the uveitis, is grown up and gone and before he left, he managed to teach me how to use this computer! I often despaired about the future when I first got it, but every day I have survived I have used and enjoyed my somewhat damaged eyesight and the experience made me realise the beauty in simple things around me. With every good wish for the success of your treatment,

  • Thanks for your reply. My son won't be able to leave home unless to a facility. And that's great about your vision. Mine has some very severe flares. They can't just treat with pred. I've been on three pressure drops and two steroid before starting this along with the acthar injection. But my flares have literally left me with the possibility of blinding myself due to me having no symptoms. If they can control the flares it would ease my mind significantly.

  • Hi, Mrsrkendall, my uveitis was of the less acute but chronic type and I have had drugs all those years and kept my sight, (which at times I doubted I would.) However, in more than thirty years of sitting for two hours once every two or three months in Moorfields Eye Hospital,(which is supposed to be our best in UK.,) I have talked to lots of people in your situation. They will get in under control in the end. If it is not a rude and nosey question, what is up with your youngster? Mine had cerebral palsy from his birth, but was ace on a computer because he always had to use one from being small, being unable to write with a pen or pencil. He studied computer science at University and although still disabled, has a good job in London and is quite happy, (I was told he'd be unemployable but he has been full time in work for 13 years now.) My eyes look a right fright, red and swollen and one has fluid at the back but who cares at 64? I can still see to do most things. I had injections of steroid directly into the eye when they were really bad, years ago. My retinas are hopelessly scarred and at one time, my guide dog was being trained! It is a very painful condition, if you ask me. Stay strong. Kind regards,

  • Nope not nosey, he has an immune deficiency where he can't fight infection and has to do infusion treatments for the rest of his life every four weeks. He's had numerous surgeries for twisted bones and flat foot issues. Has had his sinuses operated on twice, has autism and intellectual disability (his around 4 mentally and is 13), has a seizure disorder, asthma, heart condition, enlarged spleen and markers for lupus. We go to more doctors offices for him than me. I literally have three docs. Two for my eyes and one rheumatologist which is also for my eyes.

    Mine is definitely considered chronic. And for five years no progress. They are really hoping the mtx helps. Otherwise they'll have to use a more dangerous drug with many more risks to it. It's given to transplant patients. This last flare I was already on four meds and it didn't keep it at bay

    I think part of it is the fact that they don't know what for sure is causing it. I'm hopeful it not completely confident it will ever be fully under control.

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