Date: 02.02.2015
From: sleepydanielle
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Subject: Could i be in remission? Bit worried
Hi, i haven't been on here for a while. Has anyone ever been in remission from arthritis? How do you know if you're in remission? To cut a long story short i was on 4 pills of sulfasalizine daily but i weaned myself off and have stopped taking them altogether. I am about 98% pain free now but i'm scared that i could still be getting joint erosion or could still have deformed joints in the future. I haven't come on here for a lecture about stopping my pills, i just want someone to talk to. I am not happy talking to my rheumatologist and i don't have anyone else to discuss this stuff with. I decided to come off my pills and have started natural remedies which so far have worked. I haven't taken any meds since 6th November last year. My last app with rheumy was september and i havent even discussed coming off my pills. I have had slight bone movement on my hand since about June last yr and the rheumy said this was where the arthritis was pushing my fingers out of place towards the thumb. Its the bone on the outside of my hand at the bottom edge of the little finger, its slightly pretruded. This doesn't seem to be getting better and im worried the other hand is slightly doing the same. I don't have any pain or swelling or inflammation so am i just being paranoid? Can i still have actuve arthritis without symptoms? I'm really scared and nervous because i thought i was doing so well. My rheumy said she would get me an app with a hand therapist to stop it getting worse but needless to say she hasn't. At my last app also she decided to change my diagnosis from RA to psoriatic arthritis so that was strange. I did have a routine blood test back in Decemeber but dont have a rheumy app for months.....does anyone know if or how i can find out my results or inflammation levels? Does a doctor send them to you if you ask? Sorry for the long post, if anyone can help or advise it would be really appreciated. Thank you.
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Date: 02.02.2015
From: Lara
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Subject: Re: Could i be in remission? Bit worried
Hi
Remission does happen but like all of us it's different in us all. I've had remission a few times in past 4 years. I assume I'm in remission just now as not in as much pain as say 3 months ago but whether this is remission or just a rest due to change of job I couldn't say.
On blood tests I get the test 'bags' from doctors and results are sent there, I phone them 3 days after bloods done to check them so suggest you talk to your gap about this. If they get the results you could ask them I'd there is any noticeable differences in them.
And whilst there you should talk about if they can refer you to anyone else if your current consultant and nurse are not helping or advising or listening to you although I do realise this may be easier to say than do.
They are meant to work with you and listen and advise accordingly.
As to stopping your sulf I wouldn't judge you or say you shouldn't stop them as it is your choice and your body ,
I hope your gp helps you or that the nurse explains why she thinks your diagnosis is different now.
Keep well and do Let us know how you get on xx
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Date: 03.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Lara I am in remission and I am not taking the drugs the NHS rheumatologist prescribed. Ask your GP for a blood test to see what your inflammatory markers are ( sed rate and CRP ). Ask for a copy when they are ready and get to know what the results mean so you can compare them with future results. If they come back elevated, then you are probably not in remission but if they are normal and you are in no pain and have no visible swelling, then that would indicate remission. Some times RA does run a monocyclic course and goes away never to return, this happens in about 20% of cases.
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Date: 03.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Im sorry the last post was meant for sleepy Danielle , I addressed it to Lara by mistake.
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Date: 03.02.2015
From: sleepydanielle
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Subject: Re: Could i be in remission? Bit worried
Hi. Thanks so much for your help Lara and Freya, i really appreciate it. Thanks for advisng what to ask for on blood test results Freya. I will phone my gp tomorrow. Are you trying any natural remedies or are you literally taking nothing? Last time i saw my rheumy she said i need to be on meds for at least another 3 years and this worried me enough to really investigate and take a chance on natural cures.
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Date: 04.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Hi Danielle I took Minocin for a year and now I just take an array of supplements. Astaxanthin, flax oil, turmeric, bromelain these are all ant inflammatory. I also invested in a nutri bullet which is great as a lot less fiddly than a juicer.I try and stay away from gluten, as its fact that in some people it can aggravate RA and other diseases. Diet is a very important factor in healing oneself.
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Date: 04.02.2015
From: Sean
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Subject: Re: Could i be in remission? Bit worried
Hi Freya That is really interesting.... I have read a lot about AP therapy as my own Ankylosing Spondylitis is linked to a bacteria called Klebsiella - a dietary anti-klebsiella approach is pretty much accepted treatment for AS. Minocin is used to tread TB - and that is one of the bacteria implicated in the triggering of the autoimmune process for RA - like Klebsiella in AS! Then there is a great deal of evidence in medical literature that whilst suppressing the immune system this allow the TB infection to take hold - This paper here evidences that you are 3 to 4 times as likely for a full TB related infection to take hold when on immunosupressive drugs http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0110922 http://www.nature.com/nrrheum/journal/v9/n9/full/nrrheum.2013.82.html I say what if the Mycobacterium infection was there before the drugs started.... a very, very interesting article here ! http://www.michigandaily.com/content/scientist-finds-surprising-links-between-arthritis-and-tuberculosis
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Date: 04.02.2015
From: sleepydanielle
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Subject: Re: Could i be in remission? Bit worried
Hiya, thanks for the info, thats really intetesting. I take turmeric too. I have a teaspoon of it a day mixed with a shot of milk or olive oil. The other thing i do is i mix a teaspoon of bicarbonate if soda in a glass of water and drink this daily. Arthritis and other diseases can't survive in an alkaline body and bicarbonate can help level your ph balance to stop it being so acidic. I tested my ph levels and since taking the bicarb they have improved alot. I really couldn't say for sure this has what has caused my pain and inflammation to subside but i do myself believe it. I have also heard stories from real life sufferers who have said the same thing and even cancer suffers. Disease thrives in an acidic environment and bicarbonate of soda balances all your chemicals. All i know is i haven't felt this well in over 2 years, i am pain free and on no medication. :) :) :) Oh i went to my gp and asked for my blood results like you said. Receptionist was so rude and nasty as usual. She eventually printed off my results after i paid her 50p for it. I didn't realise youhad to pay for your own medical results??? Anyway my serum C reactive protein level said < 1.0mg/L [0.0 - 7.5] i think this is ok?? Does that mean my inflammation has gone down and normal?
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Date: 05.02.2015
From: sleek Fox
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Subject: Re: Could i be in remission? Bit worried
Freya, can you tell me what you use your Nutribullet for? I was thinking of getting one but think it might just be a glorified smoothie maker, which I've got already, plus a mill, which I also have. Thanks.
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Date: 05.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Hi Sleepy Danielle I am surprised you were charged for your blood test results, perhaps it was to cover the ink used to print them off !! My doctors receptionist is also a complete battle axe, most of them are. Your CRP is normal so I would agree that you are in remission. Sleek Fox yes the nutri bullet is a glorified blender but unlike a blender it can tackle hard veg like carrots, parsnips, stalks and nuts, plus it is so easy to clean and compact. I have a juicer too and have used it for years but I still, even now forget how to put the thing back together again and dread cleaning it !
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Date: 05.02.2015
From: bsk
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Subject: Re: Could i be in remission? Bit worried
I wouldn't expect to be charged for my blood tests! Next time, make her read them out over the phone, haha! Freya, thanks. I'm considering buying one. I hated cleaning my juicer too. It was so messy and difficult to do. With the hard veg, does it liquify them and do you have to put water with them?
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Date: 05.02.2015
From: Sleek Fox
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Subject: Re: Could i be in remission? Bit worried
Sorry, that was me!
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Date: 05.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Hi Sleek Fox , yes you have to add a small amount of liquid like water, milk or juice and yes it does liquidise them after 30 seconds or so. You can get them a lot cheaper on Ebay but make sure its the Nutri Bullet and not the Magic Bullet, both the same company but the latter is just a blender. I have lost my temper so often with the juicer, I put it back together incorrectly recently and a whole apple shot out of the spout, hit me in the eye, bounced off the work surface and toppled over a vase full of flowers !
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Date: 05.02.2015
From: Sean
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Subject: Re: Could i be in remission? Bit worried
Please excuse me pitching in... I was looking for a juicer before Christmas - but the Nutri seemed to have quite a few mixed reviews on Amazon with leaks and breaking down. :( http://www.amazon.co.uk/NUTRiBULLET-Nutri-Bullet/dp/B00AN040LM The one I was looking at a few weeks ago is more expensive but should last - also it extracts the juice gently, cold pressing without causing heat - apparently quite easy to clean too http://www.amazon.co.uk/Samson-Juicer-GB-9002-Black/dp/B0002VQXGC/ref=sr_1_1?s=kitchen&ie=UTF8&qid=1423157856&sr=1-1&keywords=samson+6+in+1+juicer It's still on my wish list! :)
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Date: 05.02.2015
From: Lara
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Subject: Re: Could i be in remission? Bit worried
What is best way to test acid/alkaline in body? What are best test kits?
Thanks
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Date: 05.02.2015
From: Freya
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Subject: Re: Could i be in remission? Bit worried
Sean the nutri bullet is the best bit of kitchen gadgetry I have bought for a long time, and the other good thing about it is you retain all the fibre. There is another one called nutri ninja or something ,which is also meant to be good. I have a very good juicer, it is the same one as the chap in Fat sick and nearly dead uses in his films. I am just too busy to be faffing around with something that produces one pint of carrot juice and then takes an age to clean and then have to fathom out how to reassemble the thing. I have owned the Nutri bullet for six months and have used it every day, unlike the sandwich toaster, bread maker & electric carving knife still in original boxes shoved at the back of kitchen cupboard. My Nutri bullet has ground up and liquefied a ton of fruit , veg and nuts over the past six months and is still working great.
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Date: 06.02.2015
From: sleepydanielle
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Subject: Re: Could i be in remission? Bit worried
I can't believe i was charged for my blood test either! When i said what's the money for she said it was for the paper! I don't know what it is about receptionists, they are always so mean, rude and unhelpful. I know sometimes they are busy and stressed but she had an empty surgery and was sitting doing nothing.....but she was still rude. I am always polite to people and sometimes wonder why i bother. The best way to test acid/alkaline is to get litmus paper which measures your PH balance. It's really cheap you can buy some off ebay for about 99p for a pack of 100 strips. You either use saliva or urine or try both alternately. The only thing that showed up on my blood test was that my plasma globulin level was below the normal range. This was like it when i was on my meds aswell. When i asked my rheumy about she just said oh thats for us to worry about not you. I was like eh?? What's that supposed to mean! Anyway i was hoping it would sort itself out but it hasn't. Does anyone know anything about this? All she said was it's to do with blood platelets :/
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