So I cannot take any dmards. I have had my diagnosis changed from RA to psoriatic arthritis (though I don't have psoriasis). I've had a year of trying and retrying methotrexate, sulfazalazine and the rest but been very ill on all of them. They recently tried he again on sulfazalazine but within two weeks I developed a serious UTI then strep throat.
I do not qualify for biological so the hospital are saying that is it. There are no treatment options left for me. I'm in awful pain and wondered if people had any success with turmeric, high strength fish oil and selenium
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Helzbells
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Oh ouch! What a nightmare situation. However I thought you were thought to be more likely for AS, not PsA - not that it makes a huge difference if they won't offer you any other options? Have they gone through the older DMARDs like gold?
And have they at least discussed at what point you would be eligible for biologics? I had understood from reading other people's nightmares on here that once sign of actual erosions show up then you can become eligible?
But for the moment what to do....? I personally doubt whether any single supplement will make enough difference, so you perhaps have to find the courage, motivation, and energy to make bigger lifestyle changes. Stress, sugar and being sedentary do seem to have a big role to play.
I'm not suggesting you instantly launch into an extreme programme, but in addition to supplements try small steps to improve your lifestyle if it isn't already impeccable.
And pain relief too - acupuncture, tens machines, mindfulness, wax baths - think what might help your pain.
I do feel for you, what an awful position to be put in!
Hello helix helix. I was diagnosed with RA about 3 years ago and right away got a bad skin infection and had to stop them until an ointment cleared it up then restarted and after only 2 injections the fungus like infection returned so when it cleared I was put on Humor and my blood pressure rose to stroke level so that was stopped. My Rheumatologist had bad bedside manner and was flat out rude because my BP went high. I never had BP issues before...ever. My new Rheumatologist worked with my cardio doc and once the BP is under control Humira was restarted. Now I have pus filled sores around the injection site and on and around both knees and shins. They appear after every injection and are ugly and painful. I feel much worse. I refrained from stopping the injection fearing my doctor will drop me for being difficult. I live a far drive to the RAs office and there are no closer doctors to see. I don't know what to do....the charts frighten me. I already have Aviv and uveitis. What else is there for peopleWho cannot take DMARDS?
There are lots of different drugs now. So you need to find a way to talk to your doctor about changing to something else. What some people find works is to write a letter to your rheumatologist that sets out your concerns and worries, and send it before your next appointment. And then take someone else with you to the appointment, as often that makes doctors explain things better.
A short letter -
The drugs you have tried
The problems you are having right now
And what you would like the doctor to do (change your drugs, do more tests...etc)
Oh blimey that's hellish for you! As a fellow PsA sufferer, I wouldn't want to be in your shoes. Flipping heck without meds I'm in agony.
What about steroids? I was offered the choice of a certain amount of injections a year if I didn't have methotrexate. I chose methotrexate in the end as the steroids weren't that effective. Though better than nothing to be sure!
I tried all sorts of things to ease the pain, but nothing really worked fot me. Nothing bad about fish oil and turmeric though. So worth taking. I eat a lot of oily fish.
Swimming helps greatly. Cutting out onions. Garlic and grains also. Some folks swear by the vegan diet. Didn't suit me at all, but may suit you.
Speak to the NRAS helpline as you might be able to make some kind of appeal. Writing to your local MP might also help and take someone with you on future appointments if you can - that tends to get more positive responses than the shrug of the shoulders, next! That you’ve been given.
Hi, I am so sorry to hear your news! I thought we all qualified for a biologic once we had tried MTX and one other DMARD. Are you in the U.K?
Might be time to discuss this further with your consultant and get your GP on board to fight your corner? Maybe as said in he above post, a second opinion from a different consultant.
You have to have a disease activity score of over 5.3....and if like me you always have low inflammation levels that's hard to achieve even if you have loads of swollen joints.
I wiuld try gold, it is very old but a good percentage into remission. I have been taking for 31 years, with plaquenil and sulfasalazine for about the last 15 years. Turned my life around. Never had any side effects, blood and urine tests always normal. I am a moderate drinker and don't have to worry about liver enzymes. It is less likely to affect the lungs than methotrexate and it doesn't suppress immune system like biologics therefore you don't have to worry about infection risk or cancer. Does however take a few months to kick in and requires painful intramuscular injections after whivh you move to monthly. It has the same efficacy as methotrexate. Not everyone can take it as many have adverse skin reactions but some are put into remission. My doctor said she has some patients who have taken for over 50 years without issue. Might be worth a try however nit available inUS I yhink.
There's at least one person on here who is on it....perhaps it depends on the area you are in? I think if you don't respond to the newer drugs there are places that do still offer it.
It works i know. Suffered for two years taking nsaids and plaquenil. Once i started injectable gold went into remission. Oral gold howver does not work well.
Here are some references below that prove otherwise. Doctors that say gold is useless are obviously not well educated. These same doctors will probably notalert patients to side effects associated with newer drugs such as Actemra because they are unaware themselves. Always remember that doctors are very busy and don't generally have time to read much and a lot of their training is provided by pharmaceutical companies who are interested in making a profit. I often bring in articles to my doctor on the latest research and she thanks me because she does not have time to read all the latest literature.
Kean WF, Kean IR.(2008). Clinical pharmacology of gold.Inflammopharmacology. 16(3):112-25.
Rau R, Herborn G, Menninger H, Sangha O. (2002). Radiographic outcome after three years of patients with early erosive rheumatoid arthritis treated with intramuscular methotrexate or parenteral gold. Extension of a one-year double-blind study in 174 patients. Rheumatology 41 (2):196-204.
Menninger H1, Herborn G, Sander O, Blechschmidt J, Rau R. (1998) A 36 month comparative trial of methotrexate and gold sodium thiomalate in the treatment of early active and erosive rheumatoid arthritis. Br J Rheumatol. 37(10):1060-8.
Rau R1, Herborn G, Menninger H, Blechschmidt J.(1997) Comparison of intramuscular methotrexate and gold sodium thiomalate in the treatment of early erosive rheumatoid arthritis: 12 month data of a double-blind parallel study of 174 patients. Br J Rheumatol. 36(3):345-52.
Jones G1, Brooks PM. (1996). Injectable gold compounds: an overview. Br J Rheumatol. 35 (11):1154-8.
Rau R. Have traditional DMARDs had their day? Effectiveness of parenteral gold compared to biologic agents. (2005). Clin Rheumatol.24(3):189-202.
Pincus T, Ferraccioli G, Sokka T, Larsen A, Rau R, Kushner I, Wolfe F.(2002). Evidence fromclinical trials and long-term observational studies that disease-modifying anti-rheumatic drugs slow radiographic progression in rheumatoid arthritis: updating a 1983 review. Rheumatology 41(12):1346-56.
Hi, I too am in your shoes. Cannot take any medication as it worsens my ITP.
I am on an elimination diet for more than 2 years.
Cut out gluten, sugar except for that from fruits,all dairy except home made unsweetened yoghurt ( only we call it curd, here).
I take veggie juices every day.
I take the following supplements:
Vitamins B, C, D
Calcium K2
Though my fore finger middle finger and thumb in my right hand are in different angles, I don't have pain.
My inflammation markers are way down. I once had continuous low grade fever for 3 months. My RA factor was 223. Now I don't get any fever. Now CRP is just 3. So for me, diet has helped a lot.
It's very very tough to keep up with this sort of diet, but my energy levels are good. No pain. I never had swelling anytime in my long fight with this disorder.
I use Terry Naturally Extra Strength Curamin. Definitely not a cure and it is pricy (here in the US) but it helps me quite a lot along with the fish oil and probiotics I take.
I would look into the Coimbra protocol. While there are no doctors in the UK, there is one in Dublin, and others in Europe that follow this protocol as they were trained in Brasil by Dr Coimbra himself. This is not a DIY project, one needs to be monitored with blood tests, at first every 3 months, then less frequently as time goes on. There is a multiple sclerosis site which has the list of all doctors in the world who follow the protocol. There are many people with autoimmune conditions who have achieved remission with this therapy. This is however not a cure, as one has to continue to stay on this to keep remission. This is the way I will go once I get a diagnosis or my symptoms get worse and I am not promoting anything here, I just want to share so that you can make your own decision.
It probably won't make any difference since you are in the UK, but I put my RA and Sjogrens into remission within 10 months by taking Minocycline. I take 100 mg two times a day, and there have been other benefits too. My hubby works with the Department of the Navy and the people in his command travel around the world, then bring back a variety of illnesses. Since I started the Minocycline, I have not been sick one time, unlike when I was on MTX and got something every 2 - 3 weeks for most of the year I was on it.
Maybe, since there is nothing else they can offer you, this might be an option? Although they will tell you that it is only effective at the beginning of the RA, I was advanced when I started mine because I will not take biologics unless there is absolutely no other choice.
Whichever way you go with your treatments, I wish you the best of luck.
My bloods are always normal and my anti- ccp went back to normal though the highest it ever went was 12. I have the HBL gene and some swelling in my thumb but I have fluid in alll my joints causing me a lot of pain but fluid apparently is not synovitis and they aren't sure what is going on. My consultant is very good. But he has put in several funding requests all rejected for other people because where I am you must show significant inflammation in the spine on an MRI to get it and at the moment my MRI is equivocal
Hello, so sorry to hear that you are suffering. I also went off of MTX and about a week ago, started LDN, Naltrexone 1.5mg. I seem to have less pain. I am on 15mg Prednisone, tapering (or trying to) and only take Tylenol for pain. I do take Life Seasons Pain Bloc-R for pain but it does make you tired. I saw a recommendation for Serrapeptase on one of the posts here and take that as well. I take Terry Naturally Curamin 3 times a day, not sure if it's helping but my father in law says it helps his pain. Good health to you!
If interested in Supplements, Helzbells, kindly consider: healthunlocked.com/cure-art.... (Please note the “☠️☠️☠️. . . Note")
Yes, have had good luck with Turmeric Root 🍠 / Spice Powder (+ Black Pepper), DHA 💊 in place of Fish Oil 🐠 (healthunlocked.com/cure-art... ), & Brazil Nuts nuts 🌰🌰 (for Selenium).
In perspective, they’re not ‘magic pills ✨ 💊💊 ✨ of relief’ in & of themselves. ☺️
They’re merely a few ‘tools’ 🔧 ⛏ in a toolkit ⚒🛠 comprised of life changes & techniques. 🤔
Lots of hard work, tweaks, & patient 😌, persistent trial ‘n error experiential learning. 😖🔨
Good luck 🍀, Helzbells. 😌 🙏 🍀 🌺 🌞
.
If interest in Psoriatic Arthritis (PsA), Nicole, Jennifer, andyswarbs ( healthunlocked.com/cure-art... ) may be worth connecting with? 🤔
Im so sorry you are in pain. I too had a disastrous time on methotrexate, I ended up having a life-threatening bleed after which time I refused all Dmards. I was screened for Roactemra, a biologic drug. I refused that too and opted to use ice and heat on swollen joints. Sometime later I removed an infected root canal where the dentist had left behind a file in the root, once said tooth was extracted I got better. you asked about herbal remedies proccaine/paccaine a homeopathy drop is not harmful and might help.
Look for the source...is there a reason your immune system is malfunctioning? in my case it was the infected root canal.
Yes I take turmeric everyday in smoothies and very effective I find is raw grated garlic and grated ginger in green salads. I also take cherries, Montgomery cherry products. Also I take balsamic vinegar daily in salads, my doctor told me they have been studies shown where it has cured mice
Kratom is the only natural substance that helped with my pain. Though it can cause stomach discomfort. I've tried the turmeric paste, boron, cbd, diets, and every other recommendation on this site with no success. Hope you find something that helps.
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