Autoimmune disease

[Sandyshores]

Hi, I was suffering from buzzing, tingling and numbness in feet (so painful some days I couldn't walk on them) hands, arms, legs and left side of face. I had blood tests and my ANCA was high. Saw a rheumatologist and he put me on steroids. It really helped, a lot. Then it got worse and I was put on a double dose of steroids, it doesn't seem to be working at all now. I haven't been told what autoimmune disease I have, apparently there are many, but some have been discounted, lupus etc. Has anyone else had this and what comes next? It's all so confusing and especially with the lockdown etc. Thanks

[Main1234]

Hi it might be an idea to contact the help line, you will find them extremely knowledgeable and supportive .

[Sandyshores in reply to Main1234]

Hi Main1234 I am new to this forum, where do I get the helpline number from?

[Main1234 in reply to Sandyshores]

Hi the number is 0300-365-0075 between 09.00 and 20.00.

The Vasculitis web site is another excellent resource as is this site.

[Sandyshores in reply to Main1234]

Thank you 😁

[AmyS1]

Could be vasculitis do phone the helpline.

[Sandyshores in reply to AmyS1]

Just trying to find out where I get the number from.

[ldwilliams]

Hi,

Sorry to hear what has happened to you.

I would suggest getting referred to a neurologist. No disrespect to the rheumatologist, but they only deal with rheumatic diseases and this could well be outside of that area. For any treatment to be effective you need to know the condition, because as you have said, there are many and each has its own specific range of treatments.

I would also press you rheumatologist as to what condition they feel you have, as I find that highly disrespectful to you for them not to say.

[dianamarie]

Hi, sorry to hear of your troubles but I had to chime in! I had the exact same problem!

I was on super high steroids and cytoxan at the same time and the tingling and buzzing and general pain and fatigue was making me feel like I was going insane sometimes! As part of my treatment they had me meet with a nutritionist, who then referred me to 'Doug Kaufmann know the cause', it's a program you can Google and watch on the internet or if you have fancy cable which I don't, LOL... I went on what they call a 'phase 1 diet', in which you would cut all sugars, a lot of carbs, basically all the things that feed inflammation in the body. And eating plain Greek yogurt twice a day was part of the diet as well. If you go on his website and read some of his information, perhaps it would incline you to make some dietary changes for your better health! (sure he's sponsored by people trying to sell stuff so just look beyond the ads and read the informative articles!) I can tell you after a solid 10 days all my symptoms were gone and I was feeling so healthy and strong in spite of the medications I was on. Brain fog, gone, joint pain, gone, high pitch ringing in ears, gone, tingling numbness, gone...so much more could list. I've done my best to maintain this diet all the years and I have not had to have treatment for my CNS vasculitis or lupus since making the dietary changes. I was slowly weaned off the drugs, continued with the no-sugar diet, and many years later still no treatment for my autoimmune diseases!...well aside from my hashimoto's thyroid disease, had to have half of my thyroid removed for cancer, so I do have to take levothyroxine, but that's a different situation.

I'm not saying this is a cure-all for all autoimmune diseases, but I do believe a lot of our symptoms are raked up and fed by processed, and high sugar diets! And if you Google phase 1 diet, you will see the things you should eat to begin your journey to better health!... And you will also see the foods to avoid, that cause inflammation.

A lot of our health relies on our own hands and in the actions we can take to help ourselves. Not everything requires a pill, and I would recommend anybody be proactive to find ways to improve their health! The phrase knowledge is power is still a good one!

Wishing you the very best!

[Sandyshores in reply to dianamarie]

Thank you Dianamarie I will definitely look that up. I am of the belief that there is a cure out there somewhere (natural) for all illnesses. Inhave thought about cutting sugar out as ink ow it can cause inflammation (read it somewhere). Yes into feel tired all the time. I am going to look at this now. Thank you again xx

[dianamarie]

Oh, one more thing about the phase 1 diet! Causes you to lose weight, all that sugar/ carb fed extra body mass starts to drop off.

I supplement my diet with avocados, because I don't need to lose weight!

[Sandyshores in reply to dianamarie]

Just had a look online, it talks about fungi and avoid sugar, corn, wheat etc am I on the correct site? Says you can go onto phase 2 which is easier after trying phase 1.😁

[dianamarie in reply to Sandyshores]

Yes, that is it! I bounce back and forth from the phase 1 and phase 2 diet. The phase one totally eliminates all sugars and causes the die-off in your system...you need to keep drinking a lot of water, I go with lemon water, to help flush those toxins out! and then after about a month on that you can slowly start introducing things on the phase 2 diet and take note of any changes in how you feel.

I always say to anybody I recommend the diet to is that I promise you within 10 days no matter what your problems are you will feel better! I remember the first thing I noticed was clarity in my thinking I was no longer having the brain fog and forgetting what I was about to do or about to say, after that followed the joint pain disappearing and the peripheral tingling those symptoms all went away in the first 30 days.

Again not a cure-all for all conditions but it's a step in getting your body in the right condition to be strong and healthy!

I firmly say this diet changed my life and I will continue to speak on it!

I wish you the best on your journey to better health!

[DazVin]

Sounds very similar to myself, I was diagnosed with GPA in Sept 2016.....this was mainly ears and sinuses (now deaf), was put on high dose of Prednisolone and started Cyclophosphamide infusions Oct 2016, managed 9 infusions but had a major relapse and hospitalized for 3 weeks April 2017 (large pericardial effusion). Was then put on oral meds - Azathioprine but made me very ill, then put on Mycophenolate Mofetil. Shortly after starting this I was referred for Rituximab infusions. Since my relapse I had lots of pins and needles and numbness in both feet, this progressed to shooting electric shock like pains from my feet up into my calfs. This got so bad that I could not sleep as it seemed worse when lying down, I was referred to Neurophysiology for nerve conductive tests......these concluded that I had peripheral neuropathy in both feet and also signs of this in both hands (these have not been affected so far....fingers crossed). They say that this has been caused by vascular neuropathy and there is nothing more that they can do apart from give me pain killers (nerve blockers), I have been prescribed Pregabalin 3 times in the day and Amitriptyline at night time. These have helped to take the edge off of the pain and I can get some sleep but my feet now feel like they are in blocks of ice, always cold, very stiff and painful yet if someone touches them I have no feeling.....this can be dangerous as I have found to me cost when I got into a hot bath, my feet felt nothing yet when I got into the water it was so hot I had to get out!

Hope that you get some answers

[Sandyshores in reply to DazVin]

Thanks DazVin sorry to hear of your pain, it sounds totally awful. I have been to hospital for a EMG and NCS. They both came back okay, so was told I'm safe to carry on with the steroids. Put on a higher dose as not working, but still not working on the higher dose.

[Fred27]

It is now five years since I took sick only had days to live my kidneys where at 6% I was diagnosed with anca Vasculitis I was on dialysis and put on three tablets chemo,

Was to be on chemo for six months but taken off after three months due to the chemo affected my liver & bone marrow and was put on tablets which I can’t remember it made me very sick and my skin from head too toe a terrible itch and pure red it all went away with A special drip,

I was put back on the same tablet two weeks later I was told to take it at 8pm that night I was great that day 8pm came took the tablet at 11pm I took sick next morning I was in a bed in coronary care seriously sick,

Couple of weeks later I was put on a organ Rejection tablets I am now in remission no sign of anca!!

And I was only on dialysis for only six weeks I was very lucky !!

But was on and off it during times about two times !!

With the effects off the anca Vasculitis I have mobility problems

Was in hospital twice last year where I ended up on two sticks was always on one but I told my own doctor that I didn’t want to be on two sticks all my life so I went on utube for exercises so I exercise my legs on top of my bed went walking every day sat down where I could; I now got myself down to one stick and gotten myself a bit more faster on my feet than I ever was I have terrible feeling in my legs the right leg is the worst could only walk steps but gotten faster but as I said the right leg is worse and the feeling is not easy to explain and times no feelings in my feet pins and Needles, I was on steroids oh I was on 180 of them at the beginning I counted every one of them it put me up to 26 stone it’s only now I am losing the weight steroids will blew u up I had Constant pain in my head and eyes I am off the steroids a long time but was on them last year for a few weeks oh I don’t like them my bones in my whole body is soft because of them and it effected my hip and my spine; with the organ tablets I am on there’s sides effects off them two which I have skin cancer twice I was gotten in time now I have been lucky the second one is the loss of appetite which I told my consultant it’s the best diet ever I never feel hungry I could go all with out anything to eat at five or six and not be hungry.

Also the effects of anca too is I have short term memory loss that and and the urine bag was the only two things that bothered about!! I had to get used too my bad memory I don’t let it bother me any more!!

From the beginning I wouldn’t let my illness get to me I just let myself believe there’s nothing wrong I had a very strong will that’s how I got better and with my family behind me and not never forgetting the Best consultant and doctors & nurses I have I wouldn’t of made it only for them ! Now I feel great the first time in five years I feel great I found a new pastime “ Amateur photography “ though the suggestion of my kidney consultant,

I love it !!