Very good update of RA treatment Aug and Sept 2017

Last edited by
Skip

Featured Content

What’s your health story?

We're sharing inspiring health stories of some of our members

Watch John's story

Featured by HealthUnlocked

38 Replies

oldest β€’ newest
  • Thank you so much for posting! Great info.

  • That is what the group here for. We can share the good things and information that we find. I am always into the latest treatment update to see if there is any chance to eliminate the disease. I am not contended for just into remission. I hope one day I can see something like drug free recovery.

    Let us keep our figures crossed to hope for the day to come.

  • I'll take remission right now! My mom really didn't want to go back on after a bad side effect from a second biologic. But in the end her RA started to flare again and she had no choice. She's had RA for 30 years.

  • I can understand what you mean here. I had nausea, hair thinning, rashes, tiredness and diarrhea and vomiting at the very early stage. Slowly all the side effects subsided but I continue to have nausea. Recently when my liver marker went up again, my rheumy decided to reduce the mtx for me and she did warn me that I might subject to flare hence I must take note of that. After the reduction in mtx, the nausea problem goes down and I do not vomit anymore though I still have a kind of funny feeling. I think I can accept it now.

  • It is a hard thing to live with, chronic disease. I just put on a happy face when I'm out an about and generally don't talk about it with people. But I get so tired. And achy. I would keep the achy if I could have energy again (maybe I can bargain with my RA lol).

  • Hahaha...I am just the other way round. I told everyone near me who cared to ask. I did/do not hide my sickness. Somehow, I got a lot of help from people around me. For example, I could not take my laptop on my shoulder, someone would help me to carry it up to 3rd floor, my office. I could not open the door, someone would open it for me. I could not unplug the power from the switch, someone would help me too. I could not hold a glass of water, someone would do it for me and get ready for me to drink it.

    I believe if other people know, whether they feel what we suffer or not, they will help.

    On another hand, I do have friends here who deny their sickness and go for their own traditional treatment. I have advised enough hence I decided to keep my mouth shut now as it is their own body that they decide what to do best. I told them the golden period of early treatment in vain. They said that they did not think they have what I have. Give Up!!

  • I've had a hard time, mentally, dealing with a chronic disease ;) - I did everything, for everyone. It's been a hard transition for me. I've told people that need to know and friends. And my kids have been amazing. My husband has been amazing. I'm trying to tell them when I'm not well. I don't work outside the home, so there really isn't anyone to tell per se.

  • It is so important that family members understand and supportive. I am glad you have that too.

    In my case, I am a single mother. My kids were all in college overseas. I suffered all alone for about a month. Then my daughter came home and she looked after me for about 10 months before she went out to work. That time I was very much better, I could walk more stable then and I could drive with lesser pain on my neck and back when I turned my body.

    When she came home, I really felt a great deal of relief and I knew that I needed not worry about getting food and so on. She changed my clothes for me. She also put on my shoes for me. I could not squat and sit on the floor. She took me to walk at the park and be my driver everywhere I needed to go then.

  • That's my 21 year old right now. I've had to have her help me with my bra a lot. I get so exhausted just getting dressed :(

    I'm glad she was able to come home for you. They couldn't figure out what was wrong with me, it's been a really hard year and a half. But I feel blessed to have such a supportive family.

  • You are right, dear. We are both very lucky on having supportive family members around. I am now waiting for my sons to gradual and come home if possible. But most likely my youngest son will not come home, then I may have to see where I should be. This will be another decision to make but again, the medical treatment here is fantastic so I have to consider that too. On another note, if my kids are not around with me, then I may have to think twice. I shall put that aside temporary until the time comes.

  • Yes, lots of long term decisions. My own mother after 30 years of RA, her health is not fabulous. She's stable but very deformed feet and hands. She's had a total shoulder and a wrist fusion. She's been in ER several times and a hospital stay in the last few years. But my older girls are starting to fly the nest (as they should). I'll have decisions to make once my oldest girls decide where to land, permanently. We still have a 12 year old too.

  • Still has a 12 years old, that will be a long way to go then. I am luckier in this, my 3 kids are big already. My 2 sons should be graduated in another 1 and 2 years. Then I will know what comes next.

  • When RA suddenly attacked me for the first time in summer 2015, I searched to find out what was the cause.

    The advice in that video is exactly what the guidelines are, and were then too, for medicinal treatment to get β€˜remission’.

    But there was no way I was going to get any kind of treatment with a six month wait to see a Rheumatologist in WV, USA.

    So damage was sustained before diagnosis in the UK in Dec 2015.

    Here, I received prompt care at Out of Hours service, emergency appt the following day with a GP practice instead of enduring their long registration process; and immediate, urgent referral to Rheumatology Dept. at the hospital.

    My low RA activity periods allow for limited physical exertion. No way can I do what I used to be capable of.

    Is this the result of untreated full blown positive RF and strongly positive anti-CCP RA, I wonder? Will the damage ever heal? More damage, during the first flare since low activity was achieved, means my clavicles-shoulders-breastbone joints are now permanently painful and limiting of everything.

    Comparison to those who received prompt treatment for doubly sero-positive auto antibodies would be of interest to me.

    However, I know I am more fortunate than those diagnosed many years ago, and treated with much less aggressive therapy. :-)

  • Dear Charisma7aj ,

    I did not know what RA was all about before I was hit in Jun 2014. I never heard of it before that. But then, I think I was very very lucky that I was treated very early. I would say the medical treatment here is very good and easy for people like me. My rheumy told me to just walk in if I have any flare.

    Your question of whether it was due to the untreated full blown of RF and strong positive anti-CCP should be answered by any rheumy as we do not know really. However, I do think it is somehow related to that from what I can understand from all the good videos. Unfortunately, damaged joints are permanent hence we cannot do anything about it. The only thing is continue to search for latest treatment and hopefully we can go without DMARDs under remission one day.

  • Thanks! I think the body has amazing self healing powers if we learn to help it along.

    Hope we can do that soon.

    I am using the prescribed meds meantime but damage means patience and endurance now that health is so compromised.

    Hope you enjoy your weekend!

  • I guess we have got no choice now but to accept it and try to minimize the damage.

  • .

    Hmm . . . πŸ€” πŸ’­ . . . don't know if these supplemental thoughts might interest you, Charisma7aj : healthunlocked.com/nras/pos... (scrolling downward on page toward Gerbil SoufflΓ© 🐹 πŸ‘©β€πŸ³ , last 4 entries). πŸ€” πŸ’­

    .

  • Okay, opened the link in the app instead of Siri and eventually found comments on the way we might be when suddenly finding ourselves thrown in at the deep end of finding out what in the out-of-our-depth-RA-sea might actually be useful, LOL

    Guess that was it?? πŸ™‚πŸ™‚

  • Sorry, Kai, although I am grateful for your attempts to point out the relevant bits, just not finding them and getting tired in trying!

    But I had noticed the supplements were placed down the list of useful items whereas I would not be as well as I am without them.

    Boswellia and turmeric curcumin together work better than Celocoxib, are harmless ie totally safe with no side effects.

    I can’t take Celocoxib daily either, and taking the other stuff means no omeprazole necessary, so cut out two drugs and less stress on liver.

    I take boron, and astaxanthin as well. πŸ™‚

    After stirring pan of soup I am concocting, resumed looking at link and finally found those items.

    I feel that nutrition ie healthy eating, is vital. Not β€˜diets’ but ordinary, good, real food without additives/GMO/ etc.

    Definitely appreciate any attempts to point me/others to good info. πŸ™‚

  • Dear Angela,

    You are very right to say that it is not "diets" that matter, it is the healthy food. Even a healthy person need healthy food, therefore I am not keen to follow any diet plan since RA is due to auto-immune problem instead of food.

    For your information, at the very beginning of my illness, many people around me suggested to cut this and that. Being very new to RA, I listen and I stopped all the diary product and nightshade plant and so on. It was already miserable enough with the pain but I had to eat selectively, that made life even more miserable.

    My rheumy told me to continue the diary products because I needed them badly. They also said that I needed healthy food and balance diets to recover hence I should not cut down any food as RA is not because of food.

    I put the food back one at a time, I was okay. When I stopped them one at a time, I did not find any improvement. When I put them back one at a time, I did not find any problem too, instead my condition getting very much better each day.

    Therefore, make your own decision wisely. It is your body which you know best. We are all difference, therefore we have to try to see what is good and what is bad for us.

  • .

    πŸ‘ πŸ™ 😌

    .

    No worries, Charisma7aj. πŸ™ 😌

    Not sure 'what' ( ? πŸ€” ΒΏ πŸ™ƒ) you're viewing/ seeing 😳 . . .

    No matter . . . 🀣 πŸ˜‚

    Yes, agreed, 'real foods' are key πŸ— β€” whether one wishes to label 'it': 'diet' . . . 'lifestyle' . . . or simply 'eating real food' . . . πŸ‘

    Would be nice if our experts 'got together' & 'worked cooperatively' toward finding comprehensive multi-disciplinary treatments β€” rather than tossing things back in our bewildered laps to figure out on our own . . . πŸ™ πŸ€ 🌺 🌞

    .

  • .

    Oops. . . accidentally deleted directions. 😳

    Here they are for anyone who's interested:

    .

    .

    πŸ˜‚ πŸ˜‚ πŸ˜‚

    .

    Scroll downward ⬇️ toward bottom of page: healthunlocked.com/nras/pos...

    .

    There are 4 last entries:

    .

    β€’ 1️⃣st one begins with text:

    "Merely pondering aloud πŸ€” πŸ’­ πŸ’¬ :❓ Wonder πŸ€” if Dr. Cohen addresses/ explains how other 'older' folks who do manage to improve/ heal using other methods as well? . . . "

    .

    β€’ 2️⃣nd one begins:

    "❓ Or, if Dr. Cohen has heard of πŸ‘‚ or interested in πŸ€” collaborating with folks actively practicing/ implementing other methods: . . . "

    .

    β€’ 3️⃣rd one begins:

    "There seems to be so many, many 'authoritative/ experienced' experts from a variety of arenas. 😳 😯 . . . "

    .

    β€’ 4️⃣th one begins:

    "Gerbil SoufflΓ© 🐹 πŸ‘©β€πŸ³ . . . "

    .

    Hope this clarifies, Charisma7aj. 😌 πŸ‘ ☺️

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Yes, on the NHS we get no advice at all except about medications and what RA behaves like etc.

    Very inadequate!

    Angela πŸ™‚

  • Dear Angela,

    I would say follow the advice of your rheumy is the key of going into remission.

    We, the RA patients are already miserable enough fighting for our recovery, what we want is someone who understand us and listen to us so that we can build up the strong and positive spirit together to fight the disease.

    Amy

  • I have to say that my first UK rheumy was a star! Very clear about the importance of helping myself, and that it was a joint endeavour to get me into remission, etc etc. Hugely rushed and busy as all NHS rheumies are, but packed a wealth of info into short amounts of time. I have nothing but praise!

  • Helix,

    When I was sickness, I was lost, I did not know what to do but asked what this RA was and why me? I started to look for information and found too many information but not sure which was the right to believe and to follow.

    I can understand the problem of some who are still in search of the correct information and the people to trust and to believe. Especially when someone is trying to push their products and their program, I would ask, how much he or she knows about RA? Is she or he know better than my rheumies? I choose not to follow as I trust only my rheumies.

    Amy

  • Hi Amy,

    We all find our own path through.

    I still do not think that β€˜remission’ induced by toxic drugs is the right answer.

    But meantime, that remains my course of action.

    As you have commented in previous responses to this/other posts, it is hoped that the true cause of this disease can be proved irrevocably and treated.

    Have a lovely Sunday!

    Angela πŸ™‚

  • .

    Hmm πŸ€” . . . merely 'an aside'. . .

    Found these interesting offshoots 🌱 β€” burrowing deep down into (& ferreting out) 'root causes':

    πŸ€” Journey To 100: Evolution of Medicine . . . : healthunlocked.com/cure-art...

    πŸ€” . . . Autoimmuner's. . . Documentary with Tom O'Bryan: healthunlocked.com/nras/pos...

    .

    You may already be well aware of these ideas/ concepts, Charisma7aj/ Angela. ☺️

    Some view them as 'cutting edge' science πŸ‘©β€πŸ”¬ / medicine πŸ‘¨β€βš•οΈ β€” others view as mere unsubstantiated 'theories' (stuff 'n nonsense). πŸ€”

    Wherever we fall on the 'spectrum 🌈 of interest' (disinterest <β€”β€”> fascination), these ideas are thought provoking πŸ™‡β€β™€οΈ , mind bending β†ͺ️ , plausible πŸ€” ?

    😯

    [Merely noted if such 'explorations' πŸ•΅οΈβ€β™€οΈ πŸ”Ž of concepts interest you, Angela. 😌 ]

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Thanks Kai, those links are now tabbed in my browser, awaiting attention. Not enough time right now!

    Angela :-)

  • .

    ☺️

    Well understood. 😌

    [Tomes πŸ“šπŸ“š πŸ“š of tedium. . . to wade through. πŸ˜‚ ]

    Best left to nights ( πŸŒƒ πŸ“– πŸ‘“ πŸ‘€ ) when one would 'like a change' from counting sheep:

    .

    .

    . . . . . . . . . . πŸ‘ 2

    .

    . . . . . . . . πŸ›Œ πŸ™„ πŸ’­ . . . . . πŸ‘ 3

    .

    . πŸ‘ 1 . . . . . . . . . . . . . . . . . . . . . πŸ‘ πŸ‘ πŸ‘

    .

    .

    . . . . . . . . . . . 😴 πŸ’€

    .

    .

    πŸ™ƒ 🀣 πŸ˜‚

    .

  • You are right. I do not think this is the only way to go. Therefore I like to look for update to see what option that we may have to get away the toxic drugs. Currently, like what you said, I would rather to have the toxic drugs to have quality life again.

  • .

    Good to hear, Amy_Lee. πŸ‘ You might enjoy Dr. Caldwell Esselstyn's thoughts as well: thriving.foodrevolution.org... (Also at bottom of page: healthunlocked.com/nras/pos.... ) πŸ™ πŸ€ 🌺 🌞

    .

  • Thank you for this post ! Gives me hope for cure or better treatments ❀️

  • We all need hope to move on!! Go to look at the other 2 videos, I do love the update, I hope they help you too.

  • Thanks for sharing these youtube extracts - great to know you are keeping a look out and letting everyone know about latest info.

  • I always believe in joint efforts. I believe many of you will do the same "look out for any possible update" to share. That will not only benefit ourselves but many others. In this way our efforts will be well spent.

  • I just want to say,( or shall I scream?)

    " Thank you Amy for your wealth of knowledge!!"

    You truly inspire me. :)

  • Dear Cherub,

    Do not mention that, though our experience are all different, but it is my duty to share my experience around if I can. I was in tear of no one seem to know what RA was when I was sick.

    I was looking around in pain alone and once I intended to end my life as I could not bear the pain anymore alone. My responsibilities of my son who was just in his first year of college came into my mind and my daughter would be home soon, that gave me the strength to go on.

    When I was getting very much better, I wrote to the RA Foundation here to see if I could join them to help other RA patients along. I believe life will be worth living when I can help others who are still lost out there. Concurrently I do learn more from all of you as I can see many of your experiences I did not have before so I must be ready for that too.

You may also like...