Rheumatoid....

[brightangel]

Hi guys, nice to find somewhere where there are like-minded and like-jointed people lol.

Please excuse the following ramble but I would value your help and opinions.....

I am due to have my weekly dose of 20mg methotrixate but due to virtually seeming pregnant for

several months and having the the added discomfort, embarrassment and further diminishing energy

I am just finishing 2 days of not eating, followed by juicing and eating fruit. I had hoped that would fix

it as in the past I have diminished dairy, gluten etc. and juicing have helped.

This time no such luck. My Osteo says it is due to the effects of methoT. She mentioned picking up

something in my Ascending colon?

(Incidentally, my older sister who has RA and over 40 yrs drugs was too frail and drug affected to undergo

surgery for what I believe was infection in her colon. I gather it was pretty touch and go but massive

anti-biotics in hospital brought her back from the brink though she is further weakened by it all)

.

My Dr told me when I queried if that was likely to be my fate that it wasn't likely because I eat healthy

but due to the above-mentioned diet reductions and crap eating due to affordability and lack of

energy factors and knowing that the MthoT has caused damage, I now suspect anything is possible.

This has been going on for 2-3 yrs to varying degrees and my Dr never said if could be the medication,

knowing I was making dietary changes and thinking the R.A. was now affecting my digestive system

as well.

Yet coming here I see that is likely the down to the medication.. Meanwhile my health/lifestyle has diminished further due to the now, seemingly un-necessary dietary restrictions I have imposed on myself.

I am really angry about that ......... grrrrrhhhhhhhhhh

I was supposed to go onto Humera (spelling????) but it seemed I was to be on that and the MethoT.

and I didn't want any more side effects so I didn't.

I have left queries with the Dr about the above and what alternative drug I could take.

I am awaiting a reply but I would value your considered, experienced opinions.

Thanks for taking the time, smiley-face.

[farm123]

Cannot comment on dietary issues but many people have far less side effects and better results with the 'biologic' treatments of which Humira is one and over time if it worked for you the dose level of MTX may be able to be reduced slightly. Alternatively there are other DMARD's and not every drug will create side effects for you. It can unfortunately be a case of trial and error to find the right combination of treatment which will control your disease and not cause too many side effects. Further information on drugs available can be found on the NRAS or Arthritis research websites. Farm

[brightangel in reply to farm123]

Hi Farm,

Thanks for replying. I had originally thought that going onto Humira meant

going off the methotrixate and when I found that wasn't the case I felt like

I was doubling up. If it reduces then that would make sense.

Thank you I will look into other things as you mention on NRAS and

also see what the Dr comes back with. Thank you.

[farm123 in reply to brightangel]

MTX (DMARD) and Humira (biologic) are two different types of treatment. Most studies show that the biologics group work best in conjunction with MTX so if you can tolerate it you should get a better result. Farm

[brightangel in reply to farm123]

Mmmmmmm....... okay. I didn't take my Sunday dose of M.

and still 'pregnant' lol. I am awaiting the Drs response

to a note I dropped in at her office as it can be hard to get

an apptment. It's a case of damned if we do and damned if

we don't, to some degree isn't it. If only there were a magic

wand, that would be good. Thanks.

[Hidden]

I do hate the way that we have to pay more to eat healthily than to eat rubbish - it's so wrong isn't it? I am broadly gluten free and avoid cows milk and cheese, substituting cows milk and cheese with unsweetened almond milk and cows cheese for occasional goat's cheese and Halumi. I have had abdominal troubles for decades now. Losing a lot of weight, exercising regularly and changing to a low fat, low carb diet with a lot of fruit and veg and oily fish and meat have really helped but I still have periods of nasty upper GI issues. I stopped taking MTX because of these after two years on it and I have just started Azathioprine after nine long months of immune mediated health problems. If you can't afford to do food elimination properly (and I know it's very expensive to achieve) I believe it's much better to just stick to a varied diet with plenty of protein, calcium, fresh veg and fruit.

I think it's important to remember that having an autoimmune disease can itself affect the gastro intestinal tract and many with RA seem to also have shades of Coeliacs, Crohns, Colitis, GERD or mostly commonly IBS. I have gallstones and these precede any of the drugs I've taken for RA - although some drugs may trigger a flare of these or reflux. But then so can these digestive conditions arise with under treated inflammatory disease.

I'm not saying that these drugs won't take their toll on our digestive systems, NSAIDS certainly do as I'm finding. But, if you haven't already, you really need to see a gastroenterologist to know what's causing what for you rather than blaming the drugs for all your tummy problems - as I've done many times in the recent past myself. I see a surgeon about my own tummy problems on Thursday and hope he will be able to advise on investigations as I really don't want to stop taking anymore drugs (only on one DMARD and Levothyroxine just now) in order to try and work out what's causing what.

[brightangel in reply to Hidden]

Hi T.T. yes, I just paid $8.50 for a loaf of gluten free bread that has to be toasted first 'cos it's too crumbly otherwise and then when I toast it shrinks

even smaller hahaha. I am trying to buy certain things like the vegies and

fruit for juice organic but having to use tin pineapple and beetroot because

of availability and cost.

[brightangel in reply to brightangel]

Sorry, got lost, I haven't heard of half these meds you guys mention

I will check them out. Yes I had been putting it down to my own immune system etc. but I always had a cast-iron stomach and given

no matter what I do or eat it is a problem and I have several yrs on

M. now I think maybe my body is saying enough!

I had an endoscopy couple of yrs ago or so but nothing showed and

now am worse but the Arthritis is as under control as it gets.

Best of Luck for Thursday, smiley-face.

Thanks.

[mary53]

Hi Just to add that i have recently come off Methotrexate due to weeks of nausea culminating in four days of sickness. I have felt like I was in early stages of pregnancy for weeks but this has worn off now. I did actually take a pregnancy test even though it is massively unlikely as I am pretty ancient and was sterilised some years ago. predictably it was negative...just thought that i would look massively stupid if I didn't rule out the possibility...teenager daughter thought it was hilarious and extremely cringey !!

[brightangel in reply to mary53]

Hahahahahaha, that made me laugh.

I won't be taking any test, it would have to be an Immaculate Conception!

[Hidden]

Not quite sure exactly how Mtx is affecting your digestive system. However taking Mtx injections can be one way of preventing some digestive side effects as it means the drug bypasses the stomach. Worth asking about, perhaps.

And rheumys often don't mention this, but it's important to drink a lot of water when taking Mtx - it truly helps!

I used to fast intermittently but I'd be wary of doing so these days. Over the last few years I've decided that regular, light meals are an absolute must. I don't think I'm a fussy, pernickety person by nature but inflammatory arthritis has given me a fussy, pernickety body that won't put up with additional stress of any kind. Going without food absolutely wipes me out ..... as does eating too much, doing too much, resting too much etc. etc. etc. I'm sure you're quite familiar with all this!

[brightangel in reply to Hidden]

Hi, yes, someone mentioned injections which Until this site, I hadn't heard of. I shall ask the GP about them. I do drink a reasonable amount of water

and had more this last week to help cleanse. (My sister who I mentioned

had just been seriously ill has never drunk water all her life, just tea and

juice and I just knew she would pay a price with so many years of drugs

and no chance of flushing them through).

I did start 'normal' eating again today and I think you are right about the

small, regular meals are the answer. Thanks.

[Mall in reply to brightangel]

Hi Brightangel, NRAS is a UK charity supporting Folk in the UK with RA. This forum is an excellent resource for folk worldwide but please bear in mind that its focus is UK hence names of drugs and protocols for treatments may be very different from your experience in the U.S. Have you tried any U.S. Forums?

Best wishes

Mall

[jlmack]

I've lost a stone in weight since February due to the MTX tablets from feeling sick and having no appetite. I'm having my injection induction on Wednesday for me to start injections in the hope it will help my appetite. I know MTX is the Gold Standard of treatment (if your body can allow it) and if I need biologics I know they work better with MTX too. As already said, NRAS website and Arthritis Research website offer fantastic support and fabulous and informative leaflets ( of which I have downloaded most of them!)

[brightangel in reply to jlmack]

Wow, that's a lot, I hope the change-over helps, here's hoping.

Yes, I shall become a fan of the site as it seems there's a lot of stuff

I am not aware of. Thanks.

[Gillian1163]

I have far less side effects with the biologics than with methotrexate. On Enbrel for 10 years and now just had my third rituximab infusion. No methotrexate for 13 years at least.

[brightangel in reply to Gillian1163]

Mmmmmm okay that's interesting. And yet again you mention other

drugs I have never heard of. As I said originally I wasn't aware of

how many people have this side effect from M.

It sounds like I need a new substitute for the M. and may eventually still

need the Humira. Thanks

[Gillian1163 in reply to brightangel]

Enbrel is another biologic

[Hidden]

Hi again Brightangel. I take it from the $$ that you are based in the US? Most people who use this site are in the UK and food is priced and regulated very differently here so you might find that people use different terms for drugs and have different experiences of food costs than you do.

There are other members here for the States which is great but I just thought I should clarify in case you haven't realised already and are speaking at cross purposes about food and drugs.

I am gluten free but only very rarely treat myself to gluten free bread because it's expensive and as you say it's very dry and crumbly. I find it easier to keep the weight off and help my digestive issues if I don't eat wheat and this has worked well for me as I just stick to other sources of carbs such as potatoes, rice and pad out gluten free cereals with sunflower and pumpkin seeds and nuts - which are all quite cheap in supermarkets here. I also eat a pack of Nairn's oatcakes with marmite often which are also gluten free and are my treat - along with the odd chunk of dark chocolate which I'm told has anti-inflammatory properties!

I drink almond milk which isn't expensive either and try and stick to locally grown veg and fruit because I know it's less likely to have been sprayed. I always wash and often peel fruit and salad before eating it unless I know it's pesticide free. I use a water filter jug and drink tons of water everyday as it's free and cleans the body out. I don't drink anything sweet or fizzy or caffeinated - just herbal teas and the odd mug organic hot chocolate.

This sounds very dull probably but it actually saves me money and has helped me lose a lot of weight and I believe it has helped to control my RA too - if only by taking some weight off the load bearing joints and helping me to feel more healthy and as if I'm doing something positive myself. I did find it very hard to stick to this diet when visiting the US last year because fresh fruit and veg seemed harder to come by and were very expensive.

None of this is instead of taking RA drugs - but as well as by the way.

[brightangel in reply to Hidden]

Hi T.T.,

Actually I am in NZ but still expensive for the healthy stuff.

(When I googled side effects for M. I came across you guys and suddenly

didn't feel like it was just me!)

That's clever using the seeds etc. to bulk out. They aren't too badly priced

here. Though prob. twice price of spuds I try to buy kumera as I think it's

more nutritious as well as tasty. I must get onto rice cakes - yummy, not, lol.

Yes I think it's 70% dark choccy that's optimal.

Actually you can buy rice cakes topped in choccy so I could make my own.

I have tried rice milk, pretty tasteless but cheaper and I have bought coconut

cream and diluted it to make it more like milk, sneaky trick rather than just

buying the milk.

Yes good to filter water, I boil mine 'cos I have tank water where I live and

apparently you'd never drink again if you got to see inside lol.

I guess I should cut my one a day coffee maybe, but do the green tea and

no fizzy drinks, like you.

I am guessing a lot of the drugs mentioned here are not available in NZ

which is why I haven't heard of them.

Here, you have to go through the various drugs, have reactions and then

eventually get to the point where you are eligible for Humira.

They make it the last option 'cos it's worth about $20,000.00 a year which

the Health System pays for.

I am thinking whilst I used to tolerate the M. for several years, over the

last 2-3 I have flare-ups of the symptoms and therefore my body isn't

happy with it any more.

Yes, I will have to stick with drugs of some sort but it's a matter of figuring

it out I guess.

Thanks....

[Hidden in reply to brightangel]

Oh right NZ - land of Manuka honey then? I always think of it as being more enlightened where food and drugs are concerned than most other countries.

We have to work through MTX and another DMARD before perhaps meeting criteria for Biologic drugs, of which Humira is one such, if our RA is active enough. The method used to determine this is called DAS28 and this is the bit I fail so far because I don't have enough swollen joints. This is why I'm trying a fourth DMARD now.

Almond milk is nicer than rice or soya milk I find. If it's available in NZ then you could try it as its rich in calcium and a nutritious alternative to cow's milk. I don't even find myself that intolerent of dairy or gluten specifically - but my skin and digestive system and gallstones play up less if I avoid them.

Tx

[brightangel in reply to Hidden]

Yes and I just heard of a new one, Kanuka Honey I think it is.

Not quite sure of it's properties, will have to find out for curiousity sake.

I think we have our moments. My preferred painkiller was

Paradex, a lot of codeine stuff never worked.

It stopped being funded so I paid for it myself then they stopped

having it available at all.

It seems crazy doesn't it, how bad is bad enough?????

That's why I am thrilled to have found this site.

People who have known me ask how I am and I'll say "not

too bad thanks" or I've had a bit of a bad patch but I'm hopefully

coming out of it".

The response is often ..."Well you look great" .....

(because most times I paint on a smile and a bit of makeup lol).

Or...... "Oh, I've got it in my fingers" and I think well I'll gladly

swap with you!

It seems it's only other chronic R.A. people understand or care to.

Rant over, lol.

Mmmmm the Almond is a bit dearer but I shall make the change,

thanks. Gallstones as well, aren't you the lucky one.

It's a bitch that other things piggy-back because of the compromised immune system.

Seeya......

[Karen77]

In my situation, MTX didn't seem to work. Then I started Humira and felt better within days (while still on 25 mg weekly MTX). I was able to gradually reduce my MTX (and eliminate NSAIDs) over the course of a year, but reduced MTX from 10mg to 5mg WITHOUT dr knowledge). The nearly-nothing of MTX combined with a LOT of stress and international travel resulted in a flare that lasted nearly a year bc I didn't want to take "so many" meds. My RA is now back under control with Humira and MTX (I'm currently taking 17.5 mg weekly).

I'm also trying to follow a gut-happy diet - no grains, dairy, sugar and lots of nutrient-dense foods - bone broth, fish & seafood & loads of veggies.

Do what feels best for you, but in my case, I didn't want to be in pain or allow irreversible damage to take place when I could get things more quickly under control with medication. Now that things are under control, I find it easier to manage my diet and other lifestyle aspects that could, in fact, reduce my reliance on medications.

[brightangel in reply to Karen77]

Hi Karen,

That's interesting that it kicked in so quickly.

Yes, stress is responsible for lots and lots of health issues, or at the very

least, aggravating them.

Interestingly I did investigate bone broth recipe recently.

Need to get out of my own way enough to do it. Also investigating

home-made ginger beer as an affordable option for digestive aid.

i know what you are saying and I guess it all makes sense.

Thanks.....

[brightangel]

Thank you ladies, it is good to hear your experiences and advice and I feel it will help

me with my decisions now and in the future to be following this site.

I have relied on the medical profession for my information and as we know it's not

the same and definitely no 'personal touch' so I am grateful for your input and

look forward to following along on here.

SMILEY-FACE!