Methotrexate

[soupdragon69]

Well here I am about to take my third dose of methotrexate this coming monday. Rheumatology have me on 10mg once a week and say it may go as high as 25mg as a max dose.

Was put off work for a week as I nosedived again coming up to my remicade infusion. It and commencing the metho were like a double whammy and was just so drained. GP allowed me back to work today on the proviso I phoned or went and saw him at the start of the coming week if still having problems.

Had to come home today from work after only half a shift. Am dizzy, drained, exhausted and just want to curl up and sleep. Yes my guts are settling since my remicade last tues but I just cant seem to "get my act together".

The last 3 mornings I have woke with a sore throat so am not sure if I am coming down with sommat or if its the side effects of the metho....

Have booked (via online) to go and see my GP monday morning before I have my blood tests done for my metho. I know he will put me off work again and its anyones guess for how long this time - sigh.

The gastro nurse came to see me during my infusion and I told her that I was still having problems with food getting "stuck" at times in my throat, just above my stomach and also in my stomach it sits like lead at times. Its like swallowing hard and feeling like the food is sitting in a lump or ball and I asked if it could be spasm. She says it is probably is and is related to my crohns and will talk to my gastro cons. I see him at the end of the month anyway. She also said they have come to the conclusion I have macroscopic inflammation that triggers close to my next infusion and are trying to work out what to do for the best as they discovered patients who have this issue dont do well long term. Great - just what I wanted to hear but at the same time at least they know and are trying to manage it I guess.

At the minute I just dont know if it is the metho side effects how long it will take for them to settle or whether I just bite the bullet and get on with it etc etc. My gastro cons said if the metho worked well he might be able to get me off the remicade down the line even though the metho is being used for the newly diagnosed rheumatoid arthritis.

I guess time will tell eh? I just want to get on with my life more now. On a brighter note we ordered my "sample" engagement ring last thurs. Because the gold one will be made specifically for me the jeweller is making a sample ring in silver first with a cubic zircona stone matching the diamond size first. Then if there are any size adjustments or other aspects to change we can do it based on the sample ring. He said I can either keep the sample ring or send it back. Duncan wants me to have both rings so that if I am doing something where my gold one might get damaged then I could wear the silver one instead etc. The sample ring will arrive in the next couple of weeks - am soooooooo excited. lol

 

[soupdragon69]

Hiya Pen,

I was surprised too at the combo of Methotrexate and Remicade but it turns out that Rheumatology use both in combination for rheumatoid arthritis patients if the remicade at 3mg/kg doesnt work.

Knowing gastro use Remicade at 5mg/kg rheumatology have told me that it shows how severe my arthritis is on the inflammatory front and because I cant have sulfasalazine now (that drug group triggers my asthma) or Imuran/6MP (my liver function deteriorates) I only have the Metho left to try.

My asthma cons wants to take me into hospital and run tests on me to see if Non Steroidal drugs like Ibuprofen and Voltarol (diclofenac) trigger my asthma as they are related also to aspirin and all 4 of my consultants think I am an aspirin sensitive asthmatic.

The reason he offered to do this was it would give me another option treatment wise with rheumatology if it turns up negative. The gastro nurse I saw last tues was begging me not to have the tests as it could impact badly on my gut/crohns. My GP agrees with the gastro nurse and said what is the point in putting me through the tests, my deteriorating and taking time to recover just to prove what they already know.

So overall I cant win at the minute. Suffice to say rheums and gastro are both happy with the metho/remicade combo and tell me there is research that linking both brings good results. Apart from the metho the only other option I would have would be long term steroids (we know the long term impact of those eh?) or something like gold injections but I have too many joints involved to inject each one.

Shoot me now??

I will just keep my head down for now I think. Go and see my GP monday morn, let him put me off work (which I hate giving in) and hope the rest helps me pick up.

Thanks for your thoughts I appreciate it Pen.

 

[My Butt Hurts]

Hey Soup, good to hear about the ring! Exciting!!
I would stay away from the Ibuprofen - can cause bleeding for your Crohn's. How many weeks are you between Remi infusions? Sucks that you nosedive, but maybe you can get them closer together. (Sure you've already thought of that - but just trying to help.) What a sweet name, Duncan. Yay!!

 

[soupdragon69]

Pen,

I like your idea of Milk Thistle and might give it a go myself.. Dont worry about forgetting things in relation to my asthma etc - we cant remember every detail of everyone on here eh?

I agree with you on the pred front - it does horrible things to me mood wise in particular when on it longer term (bad depression, unable to sleep but exhausted all the time too).

Will see what my GP says tomorrow morning. I am tired of trying to figure out whether its drug side effects or viral or flare etc etc etc. and post again tomorrow.

Hiya MBH,

Yep am getting very excited about the ring coming. The design is irish celtic rather than scots celtic. It is called an Odran diamond ring (pronounced ORAN in irish). Odran means Otter in ancient irish and otters were deemed to be very beautiful and industrious creatures and Duncan says it describes me to a T. Can you tell he is an old romantic? lol

My infusions were moved last xmas from 8wks to 6wks and they wont decrease them again. They did increase the dose by 60mg as I had put weight on with the steroids for rheumatology and was below the 5mg/kg. Gastro are hoping the Methotrexate helps me too and are watching me closely. I see my consultant at the end of the month so will see what he thinks eh?

Thanks for touching base both of you - it means alot believe me ((hugs))

 

[soupdragon69]

Well have been to GP this morning and he has put me off work for a week. Has told me to ring him if I run into trouble in the meantime. Thinks my crohns is flaring despite my remicade last tues grrrrrr

Poked round my tum and I doubled over - so am not very impressed at the mo. He isnt sure if its just inflammatory or infection as well and doesnt want to start pred unless he is sure there is no infection because of me being on methotrexate too at the minute.

He said if I have continuing problems he will contact my gastro cons (they used to work together and so know each other well thankfully) and kick round other options for me.

Work have been really good about it all and both my boss and deputy boss told me to go rest and sort myself out. The deputy is known as the ice queen and she said "take is easy on yourself sweetheart"!!!!! I nearly fell over with the shock!! LOL

Anyway, am going to go and stay with my fiance from today and my GP thinks its a good idea as he will fuss over me - something I have still to get used to!

Hope you are all doing ok.

 

[soupdragon69]

I agree with you totally Pen. I saw my GP yesterday again and he has put me off for another 2wks and said we will talk about my going back to work after that but is making no promises!

He told me to go back and stay with Duncan because it kept me away from the work environment (live in staff accomodation at the minute) and is easing my stress. So am off again today at some point to stay with him and will return Sunday as I see my gastro cons monday. Am going back onto my elemental drinkies again today as my GP agrees it helps me in general not to eat. Oh joy here we go again lol

Anyway, will be fine again in time. Just have to keep my head down and let Duncan look after me. Hard thing to do when you arent used to it but I could get used to it - its a lovely feeling!! ;-)

 

[Curly]

Hi soup, just pm'd you to see how you are and then read your news on this thread. Really sorry to hear you're having such a rubbish time of it. I really hope they get things balanced for you and you can get on with life. It must be really frustrating for you this stopping and starting.

The ring sounds lovely and I shall forever remember you otter-like!
x

 

[soupdragon69]

Whoohoo Curly,

How you doing? So good to see you around. Hope you are doing much better and over the op.

I saw my gastro consultant today and he is bothered by my guts not being good. Said if it isnt my crohns flaring then they need to get me sorted fast and work out what the heck it is!

I have to have yet another colonoscopy - groan

He also wants me to go totally back onto elemental drinks again. I was managing mostly on them anyway except for a small evening meal. Just hate the thought of it totally and have no idea for how long but I know it will help me alot so will knuckle down to it.

Yep am VERY excited about the ring I have to say. The sample ring was posted last Friday so should be here in the next couple of days.

Am so glad you managed to post Curly. Great to hear from you. Keep in touch. I have answered your PM too!!

((hugs))

 

[soupdragon69]

Will post a pic if I can work the darned transfer from friends camera to comp Pen!

 

[soupdragon69]

http://www.celtic-jewellery-shop.co.uk/SJR127_32.html

Hope that works Pen. Thought I would give it a try....

I like the design, meaning and also the way the stone is set is very different from anything else I have seen and its also made specifically for me which I really like the idea of as they are a bit like a cottage industry.

We talked to the guy on the phone and he said they can do alot of things to make it more personal too including engraving or putting a coloured diamond in it for instance. They can also make a wedding band identical if I wanted but am not sure yet as I think it might be a bit much and may be better going for a plain band. Will see.

The sample ring is done in silver with a cubic zircona stone so I can wear it for a while before the final one is ordered and make sure I am happy with it etc Also means they can make any adjustments and change ring sizes if needed as it is wider than normal engagement rings and so you have to order a half size bigger anyway to begin with. I then have the choice of returning the sample ring or keeping it to wear when doing things where my good one might get damaged for instance. Duncan wants me to keep it and I like the idea of that too.

The sample ring should arrive in the next couple of days so that is why I am excited lol Soppy aint I!

 

[soupdragon69]

Ok update time on the methotrexate front....

Saw rheumatology reg today and she has asked me to increase from 10mg once a week to 12.5mg (so one extra tablet) a week. If my blood tests are ok next week then I am to increase again to 15mg once a week until I am reviewed by the Rheums specialist nurse at the end of the month.

The reg thinks it will take some time still for the methotrexate to kick in. Thankfully didnt give me injection of steroids this time as I said it didnt really do much for me last time and I was badly bruised and in alot of pain at the injection site for 3wks after!

Had a bit of a shock too.... she told me my Vitamin D levels are VERY low and I needed to start supplements. I told her I had been on Calcium supplements with Vit D in them for over a year now and she looked at me. She now is going to write to my GP and ask him to give me an Intramuscular injection of Vit D to try and pick things up. I then have to have it retested in 3mths time again.

She is convinced its linked to an absorption issue with my Crohns and if I am flaring again will compound things further so is really concerned.

Apparently it is making my muscle pain, joint pain and exhaustion worse too so might help on that front. It could also explain my low moods too so relief on that aspect would be great!

I discovered through research since coming home that the Vit D blood test is very expensive to do and alot of places avoid it for that reason. Guess I am lucky she did it eh?

The rheums reg is also running blood tests for my parathyroid gland function as there could be something autoimmune impacting on my calcium and vit D levels on top of the crohns - oh joy.

Time will tell as always.... I saw my gastro cons monday week ago and have to have yet another colonoscopy too so it was booked today for 2nd december.

Rheums think it will be a while yet before the metho kicks in as I am on too low a dose she said.

Not really had any big issues with side effects I have to say so that is a good thing! I am still off work and I dont think my GP will allow me back once he hears about all the above when I see him Thurs morn and to be honest I am just to flipping shattered to worry about it.

Will keep you posted..

 

[jed]

hey soup, just had a quick fread through this thread so sorry if i am missing the point somewhere

i'm on 15mg meth a week and its doing wonders for my arthritus and crohns so far, but i am also on a drug called plaquenil

http://en.wikipedia.org/wiki/Hydroxychloroquine

maybe you could suggest that to you doc? it just boosts the meth up and helps things along during the week.

sometimes i even poop solids. joy!

 

[soupdragon69]

Hiya Jed,

Yeah the original reg I saw mentioned the Hydroxy (plaquenil) but they didnt want to put me on it at the minute.

The reasons they gave were: remicade and metho work well together and its proven by research so they want to try that combo.
also they want to keep the hydroxy in hand in case they need to use it down the line.

I now have a different reg as the original became a consultant and went to another hospital. She hasnt mentioned the hydroxy at all. I think I will if I dont get any joy with the current combo Jed.

Am just so dog tired at the mo I will try anything to feel better in any small way.

Thanks for the thoughts. I appreciate it!

 

[FruitLoop]

Hi Soup - not sure if you remember me posting ages ago.

On xmas eve i was diagnosed with RA on top of the Crohn'd and like you i am to start on Meth alnside Infliximab.

I was in floods of tears when they told me as i really really did not want meth - they gave me a steroid injection which did nothing and i will then start meth on 7th Jan.

Have you had any side effects ?

I am really scared of side effects as i took 6MP in about June and it wiped me out completely.

How are you feeling now ?

Clare
x

 

[soupdragon69]

Hey Claire,

Sorry to hear about the RA and can understand why you feel as you do about the Metho. I had 2 injections of steroids 6wks about Aug and Oct and they did very very little for me. Like you I had problems with Aza and 6MP and had to stop them. I have fortnightly blood tests with the Metho

Its good to see you around. I am currently on 15mg Metho once a week (mondays). They give me 2.5mg tablets and increase the dose by 2.5mg each time they want to. So currently am taking 6 tablets.

I did have some nausea - more pronounced than my usual for a few weeks but it seems to have settled now.

I was very exhausted for the first couple of weeks but it could also have been my crohns starting to flare badly too as it was shortly after that I ended up off work til now.

I think overall it has helped me Claire. My joint and muscle pain seem to be less and I have less stiffness too as a result.

I have been able to halve my painkillers and gone from 8 a day of both types to 4 a day mostly of both types.

I go back for review on Feb 4th to rheums and I think they might increase me a little bit more as I dont think things are under control enough yet. Gastro and rheums have both said it should help my crohns and apparently there is very positive research showing that Metho and Inflix work well together.

The only other thing I find is my skin is a bit on the dry side since starting it but no hairloss for instance.

I am returning to work on 11th Jan and this flare has been rough to say the least but hopefully the Metho will now have more of an impact GI wise too.

I also take Folic Acid tablet once a week on a friday.

Something for you to think about Claire is Rheums checked my Vit D levels and discovered they were extremely low despite having Calcichew and high dose multivits daily for 18mths! I ended up with Vit D injection and they are going to recheck my levels in Feb.

What I discovered however, was Vit D can have a massive impact on bone, joint and muscle pain.... need I say any more?

I have found that my bone pain appears to be easing hence cutting back on my painkillers. Without Vit D we cant absorb Calcium Claire! Will know more once I am off the pred in the coming 2-3wks and can assess things better.

Hope what I have said helps and makes sense too.. Something to ponder is Metho has been used for a long time and its in very low dose for us. Rheums told me they dont go above 20mg for Crohns patients so the side effects should be minimal.

Feel free to PM me anytime ok? Keep in touch and let me know how you get on.

 

[FruitLoop]

It sounds like we have very similar conditions and treatment plans at the moment.

Thanks for the info.

Will pm you