I've been suffering nausea, stomach problems and a huge flare for the last four weeks. I'm receiving no treatment at the moment because I'm allergic to dmards and don't qualify for biologics.
I no longer know where to turn or how to make myself better. Everyone keeps telling me about turmeric and vitamin D.
I've been told by the consultant diet in RA makes no difference. I feel completely let down by the NHS and feel this is destroying my career and life.
They've acknowledged they can see damage in my knees but it's still not enough. My fingers are excruciating and I want to weap at the pain in my elbows but the attitude seems to be sorry put up with it. I feel like nobody cares but they are all expecting me to function as normal. My work is ignoring the reasonable adjustments and have set an unreasonable workload, I'm not being treated and I don't qualify for any help.
Sorry I'm going on but every day is a battle now with no support at all.
Written by
Helzbells
To view profiles and participate in discussions please or .
That reads like a living nightmare and I'm so sorry to learn of the unnecessary complexities that are being added to your already horrible set of circumstances.
Does NRAS have any advice for you via their helpline? It feels like a recurrent situation that is reported here of people who don't qualify for biologics despite DMARDs having failed for them and I'd imagine NRAS has some appropriate guidance.
What sort of vitamin D supplementation where you considering - albeit in desperation? Something more akin to the Coimbra Protocol than supplementation, IYSWIM?
Diet does make a huge difference. Have your vitamin d3 level checked. Optimum is above 50. Cut out gluten. Take a good probiotic. Turmeric is good also. Research.
What a nightmare for you. Sorry, I honestly don't know how best to advise you on this one, but hopefully someone will come along with some good advice on how to manage this really difficult situation that you find yourself in. Take care.
You could always go to PALs they always seen to get things sorted? There was a issue in the express paper this week mentioning turmeric think we need cast rather than spoonfuls for it to work, hope you get sorted and in the right direction you need xx
Just letting you know I'm thinking of you .....and I hope you are feeling better soon ......or at least get something sorted with medications , to help you.
Sorry , I don't have any other advice ,
But virtual hugs to you , and try to stay positive ........
My heart goes out to you at this time. I am so sorry that you find yourself in such a challenging combination of circumstances. I do hope you find something that helps very soon. How long have you had symptoms of RA and when were you diagnosed?
There are those who think food and supplements help, but there are still many, both RA suffers and those in the medical profession who think they make no difference.
I firmly believe that changes in diet can make a significant difference and I also find nutritional supplements very helpful. I think those of us with active RA have very different nutritional needs, when compared with healthy individuals.
For nutritional supplements to work some of us benefit from taking what others would call very high doses.
I find Vit D3 helps. I take mine in powder form, dissolved in water. I take 50,000 IU WEEKLY. Yes that is the right number of zeros for me.
Currently I am taking 3 x 600 mg of organic turmeric combined with 5 mg of organic black pepper daily. The black pepper is supposed to assist with absorption.
I have also taken Krill oil for many years. 2 x softgels daily giving
omega 3 400 mg.
EPA 210 mg.
DHA 160 mg.
Astaxanthin 100 mcg.
I often wonder if those who say nutritional supplements do not work for them, are using a good enough quality product, at a high enough potency, for a long enough period of time.
For over a year I have been trying to improve my gut health and consider this to have been very beneficial . Each morning, on an empty stomach, I have natural live yogurt with fresh fruit. Usually chopped apple or sometimes various berries. I like Greek style Yogurt and go for brands which specifically name the variety of cultures used. I have just started making my own Kefir.
Recent research into Gut Health/Microbiome has found significant microbial difference between the composition of the bacteria found in the gut of people recently diagnosed with RA, when compared with healthy controls. It is early days for this kind of research. As the dysbiosis found in the gut of the RA suffers follows a recurrent pattern, this points towards there being a connection between the abnormally high levels of these specific bacteria being at least partially responsible for the onset of RA.
The scientists have not come up with the answers yet, but as our Microbiota is influenced by our diet, the evidence is mounting in favor for there being ways in which dietary changes really can be important.
Oh my darling your really going through the wars aren't you. If you try tumeric make sure you have no heart problems before trying it darling. I know it does help as my friend tried only trouble she has was heart problems. Also try Aloe Vera juice and bee pollen. Sending oodles of hugs.xxxx
In regards to your comment "Sorry I'm going on" - that's exactly what this group is here for! The people on here can totally relate to what you're going through, so rant away. x
I'm so sorry you are going through this living nightmare. I can't imagine anything worse!
I've had vitamin D3 supplements after my vitamin D level was found to be very low. You could ask your gp for the blood test as it's not good for you to take high doses if not deficient. I took 5000IU a day for 4 months and I noticed a big improvement in aches and pains (I had a pain like someone had punched me on my upper arms) but it didn't really help my Rheumatoid symptoms, just made me feel better in myself. Any improvement is worth perusing when you are feeling so rotten, so worth asking!
I've read that many Rheumatoid patients are deficient in vitamin D (I wonder why?) so it's worth asking for the test. I take 1000IU a day to maintain levels now.
I think I remember you mentioning in a previous post that your gp is supportive. Is there a chance you could be referred to a different hospital where you might qualify for biologics without waiting for further erosions? I'm not sure whether the qualifying criteria are the same all over the uk, but some patients seem to get them easier than others.
Perhaps NRAS can help with any further suggestions given the dire situation you are in. I think I read somewhere on here yesterday a post from NRAS listing clinical trials that are taking place. I'm not sure if they are end stage trials they want patients for, but just wondering if there are any trials you could qualify for where they are doing final tests on new biologics or biosimilars?
So sorry you are going through this, this is a horrible disease that people just don't seem to understand, pals is the patient advice and liaison service, every hospital has one it will be on your hospitals website. Also, if work are reneging on their responsibility to you contact your union or if you don't have one try your mp or citizens advice bureau. Please don't give up, I had a terrible time before they discovered the right treatment for me. Sending virtual hugsxx
I'm afraid Turmeric and vit. D won't do it alone There are however other more efficient ways to try to get inflammation and pain down when meds don't work, dietary modifications being the central one. There are also herbs that have shown to have a strong effect on RA. Thunder God Vine is perhaps the most potent. It has been used for hundreds of years in Chinese medicine and there are studies that show its efficacy being comparable with mtx without the body taxing side effects. This may be something worth looking into. You need a Chinese medical doctor to follow up the treatment.
Sorry your going through all this. But I thought if you failed with two DMARDS you qualified for biologics. If they can't offer you this I'm suprised they didn't offer a systematic steroid injection or a oral course to dampen down the inflammation. Ask your gp about this at least you may get some relief for a while xx
For the nausea I recommend ginger beer, it is effective in reducing sickness. I have used green lipped mussel supplements in the past had good results. It is an accumulative treatment though & needs time to show any benefit. If I were you I would certainly see the GP, you need something. Be careful taking anything ibuprofen based with bad tummy, hope you get sorted soon.
So sorry and shocked actually to see that you have slipped through the cracks.
It is unacceptable though and you have to keep fighting your corner. We are our own health advocate so please don't give up on yourself like they have. You need to get 2nd opinion from another Doc at your surgery.
Remember it's "The squeaky wheel that gets the oil"
Can I ask what type of work do you do & are you in a union? Laws are in place to ensure your well being & ability to carry on with work are adjusted to your needs. I am sure there will be info on this site about your rights in regards to this. You do need the support of your Dr desperately, this will back you up in work.
Poor you, What a horrendous time you are having. I am so sorry. There is lots of good advice above. Even if they only help a little bit, they might give you hope and a sense of progress. But, please don't take enormous doses of Vitamin D without being tested. 10,000 is considered to be the max. clinical dose, but if even that is too high for you, you are bound to feel nausea, and you don't need that.
Someone mentioned green-lipped mussels, I don't take the tablets, but have a large tub of the gel beside my bed and quite often slather my most painful joints with it. It is very cool when you first put it on, but then it gently warms up.
If you have failed on DMRDS, you can qualify for Biologics, though you have to satisfy the DAS score. From you description, i would be surprised if you did not. Perhaps your GP could chivvy the hospital, or, as someone else suggested, refer you to somewhere else.
It sounds as if you might find a phone call from an NRAS helpful. If you ring the office, they will set this up for you. It's important that you get moral as well as practical support.
The whole point of this forum is that we give support to each other, so please don't feel apologetic. I have sought, and found, a lot of help here. When I can I try to give something back, but there is no pressure to do that, and certainly not when you are at a low ebb. (having said that, you never know how many people your post has helped and some of the responses, too).
I hope things get better soon. Do let us know how you get on. J
Thank you for all your supportive comments. The only reason I'm still on the hospital's radar is because I complained to PALs. I did seek a second opinion at another hospital where a young doctor without examining me told me I had fibromyalgia.
My GP never believed this and neither does the hospital. My complaint promoted a reassessment by the consultant who I had not seen before. He confirmed anti-ccp positive RA and that inflammation had been noted on several visits but at the scan of my hands in June it wasn't seen. At that point the doctor I was under decided to dismiss me from clinic and also refuse to believe I had RA in my knees. This was apparently wrong and should not have happened.
The consultant said the issue is I have been diagnosed early and am therefore harder to treat. The inflammation will come and go but the pain remains and it's harder to evidence for the biologics despite excruciating pain.
He said the dangers of the dmards as I am allergic versus the severity of erosion is the difficulty for him - of course what that doesn't do is deal with the day to day illness for me. They also focus very heavily on erosion and forget the other debilitating symptoms. I also think part of the issue is my hospital is on its last legs. Nobody is getting appointments. RA patients are waiting 12 months for a routine follow up. I'm having to wait 5 months for an MRI. It's the fact nothing is being done between these fleeting meetings that seems to be the issue and the GPs say they can't add treatment like steroids without the hospitals consent. Last time they requested it they got a letter back saying I had no right to demand treatment and steroids were dangerous and I should realize that - it's what finally prompted my PALs letter.
I think now it's been left that I can go back on some steroids if desperate. I was put on nortrityline but am allergic to that too.
Unfortunately due to my boss giving me 40 hours work in a supposed 20 hour phased return I went down with Shingles.
My boss does not like me. he is quite clear he thinks I am making this up as I look well to him. Something he keeps on saying. He is also comparing me to another member of the team in a much less stressful job who had RA but who has had it for years and is well controlled with medication she can tolerate. I work for the health service - yes ironic isn't it.
Last week he had a go at me for taking a lousy 2 days off with Shingles and then tried to mak me walk to the printer to print out my back to work form despite me being on crutches. Then he stood and watched me struggle to carry my laptop, coat, bag and crutches to another meeting. Someone else came over an intervened to help me. My HR department surprisingly are being very good. I made them aware and they say they are going to step in if he does not put in any reasonable adjustments at my annual appraisal (which he's canceled 3 times)
Someone I know with MS swears by 50,000 vitamin D3. I have got curcumin 95 and biopine (pepper) tablets as I was told this is what you should take.
If the person with MS is taking 50,000IU D3 a day (presumably), that's sounding like the Coimbra Protocol which has to be managed very carefully (additional supplements; no dairy in the diet; repeated tests for calcium and PTH levels).
Is this person in the UK because it's supposed to be quite tricky to do here - not least because of the difficulty of obtaining and affording the requisite amounts of K2 and a decent source of the omega 3s? Plus the cost of the medical supervision...
So sorry to read about your pain and feelings of the NHS letting you down. I too feel let down but have ttied to take control of my RA in the absence of phone calls being returned and anyone appearing to give a damn.
I take turmeric and I believe that diet CAN help, though not cure this cruel disease. You can also take garlic capsules and ginger as these all have natural anti inflammatory agents.
My fingers too are very painful and I wear gloves at night to try an prevent my hands closing up in my sleep - these are special for arthritis and do work to some degree. Exercise too is crucial. I do my best, but at the moment feel crippled with my shoulders, wrists, fingers and ankles.
Your workplace is obliged to take your condition into account, especially if you can show doctor's, etc written evidence of your condition.
I have also read about CBD oil which is derived from cannabis. I managed to get a small bottle from Holland and Barrett but haven't tried it yet!
First of all big hugs , your not alone . Go back to your gp and tell them exactly how you feel , ask to be referred to the pain clinic and anything else they think you could benefit from . I am in the same boat as you Hun . Day to day feels like Groundhog Day constant pain and agony plus trying to do your job and home and chores etc etc . No one knows how crap and down you really feel . Well this site I've found really does help , the comments and support have been overwhelming and it's so nice to talk to someone who is actually been through the same thing you are experiencing now . I know it's hard Hun but keep pushing everyone ( as if we haven't got enough things to deal with day to day ) I've learnt that unless you hassle and chase people ( docs , help at work , benefits , blue badge applications ) you don't get anywhere , I had to push my doc to refer me to pain clinic , psyio and anything else I could even get a little benefit from ). No body tells you nothing so you have to ask . Go to citizens advice see if they can help out by shedding light on something . It's hard but you'll benefit from it so be a pain , push to see the rheumatologist earlier and say your struggling . It all helps Hun trust me I've done it and I'm normally the quiet one who doesn't like to make a fuss . Chin up and we are all here if your feeling down xx
What a nightmare for you, there has been some excellent advice given and I join them in hoping you find something that works for you . if you are looking at alternative treatment, as an option in seeking help I recommend having a consultation with a Medical Herbalist who will provide a holistic approach in treating your symptoms, profiling you, looking at your life style and diet and prescribe herbal treatment and diet advice specific to you; look for a herbalist near you who is a member of the National Institute of Medical Herbalist NIMN.
Hi, I'm so sorry to hear you're feeling this way, I know a lot of your struggles and have RA myself. My rheumy never told me a lot about RA so I did all the research myself. I've read over and over again that a vegetarian diet helps improve RA but when I asked my rheumy about it he told me it doesn't make a difference. However I stopped eating meat anyways and felt and improvement in pain pretty soon afterwards. I think doctors won't ever admit how much natural remedies can help because most of them obviously want you to buy the meds... I've also been cooking with tumeric as much as possible and when I'm in a lot of pain I drink hot water with honey and tumeric (or cinnamon) before i go to sleep and have so far felt that it helps. As for the nausea, I have that too as side effect of Methotrexate and since i could barely deal with it I've recently started to vape CBD Oil. Pain and side effects reduced and I was finally able to enjoy life a little more, so I really reccomend that!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
There are however other more efficient ways to try to get inflammation and pain down when meds don't work, dietary modifications being the central one. There are also herbs that have shown to have a strong effect on RA. Thunder God Vine is perhaps the most potent. It has been used for hundreds of years in Chinese medicine and there are studies that show its efficacy being comparable with mtx without the body taxing side effects. This may be something worth looking into. You need a Chinese medical doctor to follow up the treatment.
Feel so down like nobody is taking me seriously!
Feel like I'm getting worse...
Feeling so fed up
