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Can Methotrexate cause lasting damage

It's been a while since I did an update, so...

I've been on Humira since christmas and on the whole it's doing pretty well. BM's have dropped from 3 a day to 1 or 3 in two days kind of number. However, I'm having to still be very careful of my diet. The wrong thing can still send me into a 3day grumble.

I know when my injection is due because at the weekend before it's due my jaw starts to ache and goes crack! sometimes.

I'm also still kind of tired. I did get quite a boost in energy levels when it first kicked in. Dont think I could have got any lower mind, so any increase would feel pretty great. I wonder if I'm getting used to that level, or what, as I find I feel really tired all the time. This is not a new feeling as I used to complain of it years before I had Crohn's symptoms. Whether I'm back there, or this is different, I dont rightly know. Funny thing is I can climb Ben Nevis (1344metres), feel pretty good the next day. But sit in front of the computer and I find myself unable to think why it was I wanted to come in here, what words to write, and generally fall asleep. Which is not good if I'm to get back into writing software at the end of the summer! Just dont know what the heck I'm going to do with that one. It does make me wonder if methotrexate has done me lasting damage.

I've been thinking that this spring and summer I'm going to do something ridiculous and climb all the Munros. It's kind of morphing into seeing if I can get anywhere near gaining the summer Mountain Leader Award - UK mountain guide certification thang. Just so that if I am unable to program, or can't face going back into an office I have something I might be able to do for a job. Of course, having said that to someone outside of family I'm probably jinxing my chances! And then there's turning something you like doing into a job making it into a chore. Hmmm. Jury is out on that. Might be all I can do tho bar stacking shelves in a supermarket.

Ummm, my next GI appointment was put back a couple of months by the hospital. I was looking forward to discussing with him some of the above, but it'll have to wait until September!

Just looking forward to getting back into the mountains after Easter, hopefully for 3 weeks as I've found a safe and secure fridge to stash my drugs whilst I wander about the Highlands!
 
Nice update, Beth

Funny thing about the "brain fog" when you're in front of the computer... happens to me too. I think I'm ok, but when I suddenly need to engage I find the faculties aren't all there. Been off work for a while now, don't know how I'm going to manage when I go back

Stick to the Munro bagging and you won't go far wrong... excellent to have an ambition like that
 
Yes, VC, things do seem to be looking up! Think I would have gone mentally awol if humira hadn't done anything. I'm just trying to make the most of it whilst I can.

Brain fog, Steve, that's it! It's soooo frustrating. I know I can think and do logical analysis of problems, but more often than not now I struggle at the slightest thing or trying to pull memories from the back of the store, or where ever the hell they go!

Oh yes, another bit of update:
I had a hearing test back in ummm, Feb. My hearing at the top end is dropping off the cliff - more like that of an old person. I was even offered a hearing aid to see if it helped. But since nothing untoward was found or suspected, other than 'old age', I declined for now. I can go straight to the audiologists in I feel it's time. The way things are going that might be as early as next year. Dont know whether this is just plain old getting old, or related to Crohn's in some way. Sigh.
 
Hi Beth

Glad to read that the humira is helping with some symptoms. I can relate with you to the tiredness! It gets frustrating sometimes. But that is great that you can still enjoy climbing the mountains! Why would they make you wait till Sept for the next GI appointment if you have concerns or questions? That seems like a really long time to wait.
 

Entchen

Chief Dandelion Picker
Hi Beth: Thanks for sharing this. I have a question for you: is your jaw cracking due to the meds or something else? Mine just started cracking a couple of weeks ago (it happens once or twice a day); I'm going to see a dentist next week but am curious as to what it could be! Thanks. :)
 
Why would they make you wait till Sept for the next GI appointment

because I haven't said anything to them so far, and it was scheduled as a routine appointment. I could probably phone up an plead, but what do I say: I'm fine but still mentally tired as a tired thing but can climb mountains no prob's.... hmmm, well you know what I mean. It seems pretty lame and non-specific to Crohn's to go pushing around.

is your jaw cracking due to the meds or something else?

It's not the med's Kelly, I believe it's related to the Crohn's: get Crohn's symptoms for a year, fistula, try to control with diet and my joints start aching, especially jaw. End up on azathioprine, aches ease remarkably. Have to go off aza, jaw pain comes back before I try 6-mp. Whilst waiting for Humira, jaw starts again. I end up with buprenorphine patches and gabapentin for jaw and back pains. Start Humira and jaw pain eases and gradually fades down quite a bit. Just before each Humira injection jaw pain level rises a little and jaw goes crack!. Eases again a day or so after injection.... The engineer/scientist in me recognises a pattern and understands it could be directly related, or it could be an unintened consequence. For example my bite, ie the way my teeth go together, could over the years have been poor and caused inflammation that has come to the fore by chance and is being controlled by the meds as they aren't that specific to the guts but are rather system wide.
A rheumatologist told me face to face that my jaw pain is not related to the Crohn's and I should see a dentist about my bite. However in a letter to my GP he was far more cagey and said my joint aches and pains and other symptoms could be related but he wasn't sure.

Given the other problems I'm having and the way they all came up around the same time I believe my Crohn's haas an aweful lot to answer for.
 
Regarding the jaw cracking. My jaw has cracked for years (maybe from when I was first diagnosed with crohns? Who knows?). My dentist used to comment on it every time I went for a check up... a loud crack on both sides... but he never offered any comment on why it should be.

Six months ago I decided to get the teeth in my lower jaw sorted out, they were a bit crooked at the front. I went to see an orthodontist who x-rayed all my jaw and said that despite the cracking noise, there was no evidence of any arthritic changes in the joints of the jaw (good news). The orthodontist also said that having my teeth straightened would change my bite considerably... there would be a while when it was changing that it sort of wouldn't fit properly, then it would all come into place.

I've had the braces on my lower teeth for almost six months now. As well as the teeth moving I noticed that my jaw stopped cracking... but it sort of seized up so I could hardly move it at all. Then in the last month it has all loosened up again... it feels like my bite has settled into the new position and my teeth are now straight (woohoo!). My jaw still cracks occasionally on the right side, but it is all a lot better now.

One suggestion I would make is to have a consultation with an orthodontist. You have to be referred by your dentist, and you'll have to pay about £100 for the initial visit (should include the x-ray). But there's no obligation to have the treatment done, just get the advice and go away and think about it. For me, it was worth it to know that the problem with my jaw was not arthritis
 
Hi Beth glad to her your feeling a lil better! I do not get the jaw thing at all, but struggle with the fogged in feeling constantly. I am always walking into a room and then forgetting why I went there. It is very frustrating and a bit scary to think that i am to spend the rest of my days as a dimwit. The simplest act can stump me and I just cant think my way through sometimes.
 
hi, I'm new but glad to hear you are feeling better.
I have the jaw cracking thing, and it sometimes goes stiff, so I have to make myself crack it just to get my mouth open to yawn, it's mainly first thing in the morning though. And the fog thing, I have that awfully and I'm only 20. I've lost dozens of things, as I put them down, walk off, then can't remember where they've gone, or think I'll look that up later, sit down at the computer and it goes right out the window.
I'm on Humira, Have been for about 3 months now, I was wondering whether you have any other side effects? Or have like a lapse where it seems not to work for a few weeks?
 
The 'fog' thing is interesting. I may have to do a poll. Google searching brings up quite a lot of anecdotal stuff, and I was about to say little from the medical prof's, but I just realised the terminology would be different: 'cognitive function'. That brings up some more interesting stuff which I'll have to think about.
 

Astra

Moderator
At my place of work (ASD school) we have regular INSET days were we are trained in current theories of Autism etc
one that springs to mind is Executive Functioning which we trained on years ago(this is something that someone with ASD struggles with)
This is where your fog is Beth, these are thought to be carried out in frontal lobes. such as organisation, planning, ordering, episodic referencing, sequencing and remembering what to do next!
I have days like this, and I believe Crohns is the culprit, I've often wondered during a flare and fogginess, If my brain is inflamed too! I suffer terrible headaches when I'm flaring and can't think straight at all.
Here's something for you all, which I trained in, bit of fun, but it works for that fog! It's called Brain Gym
1. Drink loads of water
2. Stimulate your brain buttons by placing one hand over your belly button whilst rubbing the accupressure points just below your collarbone to the right and left of your breastbone, two knobbly bits, use your thumb and index finger, and rub them
3. Cross crawling, either sitting or standing, lift one knee and touch with the opposite hand, and then the other knee and hand, repeat slowly 10-25 times
4 Stand and draw in the air with your finger a large number 8 on it's side, over and over again

Feel silly?
These points bring blood flow from the hypothalamus to the frontal lobes, to assist us to think more rationally and restore balance to the occiput and inner ear.
So if ever you're sat at your desk or computer and the fog comes down, rub your buttons, cross crawl and do some lazy 8s!!
Enjoy!
 
Sorry Steve, I owe you some links and stuff. It was a bit tortuous getting where I did and I couldn't find them instantly the other day, I've not been in a great place the last few days... not Crohn's wise that's been okayish.

And thanks Joan. I took one of those facebook app autism questionaire the other day... and scored borderline but functioning! - always thought I was a bit. It's the brain function thing that is really worrying me. I used to be able to deal with the sh*t of every day life, and making decisions. But lately it's the decisions that I'm getting so wrong, and too scared to make one for fear of getting it wrong... And as any good manager knows, it's often worse to not make a decision than make the wrong one. Arggh!
 
I agree with that last sentiment... if you don't know what to do, don't do anything

Anyway... I'm going to try out that brain button thing, maybe I won't have drink so much coffee (with the inevitable consequences that has on my bowels)
 
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