Diagnosed 3 months ago but have had symptoms and joint damage for years. Just overlooked. I do not have any signs of psoriasis but do have joint issues with damage to some. I just started getting the flare ups this year and get fever with the flare ups. I am just curious if anyone treats with natural supplements and find then beneficial. I do have elevated liver enzymes (not sure why) so my rheumatologist has gone right to Humira injections, which I am to start next week but would rather not, if natural remedies may help me. Thanks
1 Like
Thing is, there are loads of things that may make us feel better, but rather fewer that can prevent or slow down joint damage and biologics have a pretty good, evidence-based track record in achieving that.
Joint damage is the biggie really. A ābitā might not seem to make much difference but if it progresses then disability and lifelong pain are on the cards. Iām not keen on taking drugs for anything but I was desperate to start biologics primarily for that reason. To my knowledge there are no complementary remedies that help keep disability at bay.
Others may have some ideas about complementary therapies that can help with symptoms but for me the two main ones, which may sound a little boring and obvious, are exercise and a good, wide-ranging diet. Exercise and generally keeping moving helps me more than I can say.
Thanks Sybil.
I agree with Sybilā¦I tried all the natural āremediesā (but Iāll admit half-heartedly because I really wasnāt convinced theyād help anyway) and none of them workedā¦I canāt say they even made me feel better.
I was like you, not wanting to take ādrugsā for my psoriatic arthritis. I put off treating it for several years because at first it was mild and gradual and I could deal with it. When it started getting worse and my rheumy was trying to push the usual pain pills and DMARDS on me, I wouldnāt cooperate. I kept thinking Iād rather deal with the pain (hoping Iād have a remission or something) than be on strong meds the rest of my life. Finally, I found this website and told the people here what was going on. They didnāt have much patience with me, and pretty much assured me that if I didnāt start treating the disease with ārealā meds, Iād be sorry when the disease got the best of me.
I think itās great your doctor went right to Humira. Hopefully, youāll notice an extreme improvement in a very short time. I started Enbrel 3 years ago and the results were amazing. I havenāt had any fatigue or stiffness for 3 years now. But, unfortunately, there is joint damage and my feet are horrible. Iāll be 64 soon, and I have very painful feet-some of the time so painful I can barely walk. All because where my bones meet at the arches the cartilage is completely gone, so bone on bone on the middle joints of both arches. It isnāt fun. Iām just glad the rest of my foot joints have cartilage, although Iām not sure the pain could get much worse! I wonāt talk about the damage in my back and neck.
Iām sure most of PsA sufferers end up with some damage before they get proper treatment, and I doubt if many of them are completely pain free. But, I know I couldnāt take the PsA symptoms which have been relieved by Enbrel AND the pain in my feet and back.
Good luck, cindybme! I hope youāll get good and fast results from Humira!
1 Like
Yes - there are double blind studies proving some do work and I take them. Even my doctor says they work. Trouble is the improvement you get is weak and/or treats related conditions rather than PS itself.
Here are the ones with double blind studies and effects:
-
Pycnogenol - small reduction in general inflammation and joint pain - I take the more modern version Enzoginol (or equivalent depending on what I can get) along with grape seed extract. Many double blind tests on effecy especially from Europe where its quite popular eg:
https://www.ncbi.nlm.nih.gov/pubmed/18570266 -
Rose Hip Vital. Helps in ensuring you sleep well and not kept awake by pain as well as reducing inflammation and pain. Again - not strong - weak effect - but its there. Double blind tests done eg: https://www.ncbi.nlm.nih.gov/pubmed/19818588
-
Glucosamine and Chondroitin. Look for a ratio of 5 parts Glucosamine and 4 parts Chondroitin. Most skimp on the Chondroitin - I go for the one with the most Chondroitin I can find. Mixed results from double blind studies but overall is thought to be effecous to some degree. Helps with cartilage degeneration that many with PSA also have.
Is it worth the money for the effect you get? Well if money isnāt really an issue - yes - if you are scraping hard for every cent donāt bother.
Of course with your Methodrexate you must take Folic acid and my doctor said he is not a fan of taking just one B vitamin so I take a high potency B multivitamin as well and a general multivitamin just to be sure.
Thanks
Bill
Iām quite partial to tumeric capsules and high quality fish oil capsules. I perceive I notice when I run out but as to whether they actually do anything coherent, I really donāt know.
Thanks Grandma J. I just wanted to make sure there were no āmiracleā natural cures before starting the injections. Thank you for your input and advice. I am 59 and my symptoms pretty much mirror yours. I think that we live with this so long that we donāt realize how much it affects you and that any little improvement is welcomed so I will move forward to the humira injections with a more positive attitude.
1 Like
Good to know Bill. Will research the sites you posted. Thank you.
Thanks Poo. Already taking both of them. Good to know you notice a difference with them.
Sorry just had to comment. These are the kind of studies sellers of supplements LOVE to do and Love to quote and make sound legitimateā¦ (when they are not)
1 Like
What my stats professor said when I was a student those many moons ago is of relevance here - statistics is like a bikini - its what you donāt see you want to know about - amusing and of course sexist - but its gets the message across. The double blind studies are valid - but care in exactly what they say is required.
Your bottom line (its the same as mine) is correct, but I am not as dismissive of them as you seem to be.
Thanks
Bill
@bhobba The double blind studies are worthless without a well define cohort (in this case there isnāt) and at least 57 subjects on each side, but more importantly that you have what they are studying. In this case their loosely defined cohort was RA and OA. There is little doubt these supplements can have an effect on synovial diseases just as Glucosamine and Chondroitin can have an effect on bad knees.
70% over of the population have bad knees (meniscus tears) Glucosamine and Chondroitin help these people of course most (80%) get past it with no treatment. They do surgery and if you want what I still consider an unethical study which has been repeated several times with the same results. It was found that while there was benefit to the surgery, there was equal success in pain relief for those who had fake surgery. (this was roto-rooter arthritis surgery/cleanout) Call it Placebo effect if you wish (which with surgery approaches 40% for all surgery and 25% with anything else. My contention is we need to use a lot more placebos so long as they are harmless before trying stuff we know to be high risk.
Iām a believer in Rose Hips BTW of course I use them as a tincture instead of tea (okay I ferment the tea and make wine ) i also have great luck doing the same with lemon balm. A bottle of either ātinctureā and I promise you what ever ails you gets betterā¦
Love the Bikini story. I used a similar one that canāt be repeated here back in my teaching days. Hereās the thing with reading summaries of stories or commercial enterprises quoting them (and there is a million similar stories) The old axiom of MOST fatal car accidents happen with in 20 miles of home. Most folks eventually figure out that is because most driving is within 20 miles of home. BUT few go on to ask the rest of the questions. what portion of people driving MORE than 20 mile from home have fatal accidents. Low and behold THAT number is higher.
Sorry to belabor stats. it was my life as was reviewing studies for inclusion in peer journals
1 Like
Good to know. It is very overwhelming when knew to all of this and it is great to get so much feedback for me to further my knowledge and plan treatment.
Love the comparison.
Thanks for breaking it down. Again, as newly diagnosed, I am seeking help from the ones who have lived it, tried it and found it to work. I appreciate the time you took to explain this and shed light on these studies.
2 Likes
Cindy
Sybil has distilled things down to joint damage, and I wholeheartedly agree with her.
The other distinction we need to make is that of symptom control vs disease control. Have you seen the Symptom Control vs Disease Control article in our Newbiesā Guide?
Iām really impressed with your rheumatologistās cutting to the chase and recommending a biologic.
The symptom control v. disease control thing is key. But it can sound as if aggressive treatment can only play a very limited role in reducing a range of symptoms whereas in my experience it can help with a lot of things and make us feel much better overall.
There was a period when despite having swollen & increasingly painful joints I could still tell myself I was relatively healthy, well at least I was still working and enjoying life a bit, sort of. But then the disease ramped up that bit more and it became pretty obvious that I was sick all over. I stayed āsicklyā - losing weight, unable to stay awake for long, weak etc. - while taking DMARDs, though these symptoms did lessen. Then once I started Humira I discovered for the first time in years what it was like to feel healthy. And although our own perceptions of what is happening with this disease can be misleading, there were objective indicators that I was getting better generally e.g. the anaemia of chronic disease which Iād had mildly for ages disappeared. When I reflect on all of this I come to the conclusion that my general health is better on the biologic than it would be without it, even leaving aside the protection it gives my joints.
There are still a fair few symptoms Iām keen to tackle, maybe Humiraās getting weary or maybe I am because some pains etc. are new. Like I say, never underestimate the power of exercise & generally looking after yourself but as for adding in the complementary pills and potions, although Iāve become a bit sceptical Iām still open to persuasion.
1 Like
Thank you Sybil. I am the type of person that seems to have side effects from any med I start and I have learned over the years to try other forms of treatment before starting another med. It is nice to hear that humira has been successful for you.
1 Like
Point taken Seenie. That pretty much says it all. Thanks
1 Like
Oddly, despite the fact that the biologics are the most powerful and effective weapon in the rheumatologistās arsenal, they are also the meds with the fewest side effects.
I know, I know, if you read the patient information or listen to the disclaimers on the tv commercials, they scare the pants off ya. But the truth is that very very few of us have suffered side effects beyond site reactions. I had a big red patch on my thigh for months. But I felt fab! For by far the majority of us here, the worst thing that happens on the bio is ā¦ nothing. And far more people experience something very good indeed.
Iām sure tntlamb will fill you in on the statistical considerations. Another thing to remember is the adverse effects of the disease: joint damage and organ involvement (and in my case one organ that gets involved bigtime is my brain ā¦ LOL). OK, so this year I developed skin cancer, a basal cell carcinoma on my nose. That may have been from my years as a lifeguard, or it may have been the Humira. Or a bit of both. In any case, the procedure to get rid of that skin cancer was nothing compared to a knee replacement or a hip replacement. And Iāve had two of one and one of the other, with the fourth on the books.
And Humira? It has given me my life back.
1 Like