Feeling tired and a bit sad

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KayleighMeek

KayleighMeek

Joined
Dec 3, 2010
Messages
774
Just felt I had to write this out as I can't stop going over and over in my head. I am feeling really frustrated I am trying to reduce my methotrexate dose, after speaking to my rheumatologist and getting the ok, it's just not going well at all.
I have gone from 25mg to 17.5mg and I am in a lot of pain my joints are sore and I am struggling walking again. The painkillers mixed with crohn's is making me feel constantly sick and I'm forcing myself to eat arrrrrgh.
I am so sad and close to tears constantly because I am trying to come of methotrexate to start a family but I just don't feel like we are ever going to get there at the moment the way this is going. The rheumatologist and GI said I may need steroids whilst TTC and through pregnancy but obviously I was hoping that with the cimzia it would keep me in a good state of health. Plus last time I took steroids I still had a lot of problems with joint pain and I just really don't want to keep going back to them especially so often, I don't want to cause myself problems in the future.
Sorry for this bit of a moan but I needed to get it out. Thank you for reading
 
Hi Kayleigh
Im sorry for you hun,I cant cope with Crohns alone at moment never mind Rhumatism and TTC 2. You are so stressed and I c why. Maybe you need a break from the TTC,sometimes when you stop trying it just happens!!!!
Good luck to you babe and hope you feel better soon.
Luv Nicki,Derbyshire. xxxxxxxxxxxxxx
 
Kayleigh you have been through so much! BIG HUGS and zaps of healthy vibes.

I know you want kids and mtx is an abortifucant. Are drugs like 6mp or Imuran approved in the UK for crohn's and arthritis? Maybe there is another option that's pregnancy safe while also giving you a life. You need your energy to be pregnant, you can't afford to suffer like you do now. Have you brought this subject up on the trying to conceive section of the forum? Maybe others have tips.
 
It's quiet over in TTC but I will start a thread to see if I get any replies.
Unfortunatley I have tried both imuran/aza and 6mp and ended up in hospital with pancreatitis both times. I have exhausted all other medications even cimzia had to be prescribed by my rheumatologist as its not licensed for crohns here yet. After these it will be trials/surgery, Unless something else gets licensed pretty quickly.
I need to try and get as healthy as possible but its tough as all of you know. I am getting to the point of wanting to try surgery as its the only thing that hasn't been tried yet but I know that probably won't be the answer I am looking for.
Thank you for replying it really means a lot.
 
No I have never tried ldn I don't even know if any of my Drs would prescribe it for me. I have read up a bit about it and it is interesting. Have you tried it Ngng?
 
Your doctors are unlikely to prescribe it but there are lists of doctors that do if you wanted to pursue it. I was going to try it but I was on pain killers and anti-diarrhea meds which I would have had to stop. Theoretically LDN would reduce the need for those but I couldn't stop and then landed in a bunch of surgeries with doctors demanding I start aggressive treatment. I know Kev is a big proponent as are many others. I simply mention it since you failed many of the others.
 
It's something I would consider trying I have been looking and there are places online in the uk, you have to provide a letter from the GP or specialist but I don't feel comfortable doing something over the Internet. I will bring it up at the next appointment I go to and see what they know about it.
 
Thank you this site is really good I was looking at it earlier. I will look into it some more tomorrow and get myself more familiar with this option.
Hopefully tomorrow will be a better day pain is still bad but I am off to try and get some sleep but don't know how successful I will be. Thank you again
 
For whatever reason, getting LDN prescribed in the UK seems to very problematic. There is a doctor in Dublin who has been prescribing it for his patients for over a decade now.

Other than that.... I can't recall off the top of my head anyone who managed to convince a doctor to put them on it. (I could be wrong... the top of my head is directly above a lot of rusty gears).

Here are the pros of LDN. It is safe. Possibly the tamest, mildest side effects of any drug you will ever try. Very good success rate... High 60's to high 80's success rate (I think the highest I've seen published is 89%).. on par or better than any other medication. So, safe and effective... I've been taking 4.5 mg of Naltrexone for 5 years, 11 months. No side effects... except for some wonderful dreams at the start. I really really miss them...

The downside... it is a struggle... almost nightmarish... to get a doctor to prescribe it. Why???? Damned good question... it is legal to prescribe it, it is ethical to prescribe it.. the 'problem' is that... it still is not FDA approved. There have been 3 clinical trials (2 for adults, 1 for children)... all have demonstrated it to be a safe, effective treatment.

Now, as I see it, folks who are interested in LDN have some options. Postpone trying it until the US approval process completes,, then wait till that filters out to the rest of the world... or find yourself a doctor who will presribe it now. I have lived an almost normal life since I started on it... if I had opted to wait.. I'd still be waiting (if I'd survived minus it)... and I shudder to think of how much more ravaged my body would be by now. The only IBD issues I have now are from large scale scar tissue, and from side effects from the 'other' drugs I tried before LDN came along. Now, if there are other aspects, facets of life someone with IBD wants to explore... but the type of drugs, or the dosage they're taking is prohibiting that... then LDN might be the answer. You can't find a lower dosed treatment.... which might be just the thing to open doors, or eliminate barriers for you.
 
I brought all 3 published studies printed out with me to my doctor, and brought lists of side effects of the meds he was offering up (6-mp, humira, aza, cimzia) and told him that I really REALLY didnt want lymphoma and therefore I was going to either try LDN or go off everything. He said that he didnt think LDN would work but that didnt mean that it definitely wouldnt and he'd rather me take LDN than nothing at all. Every other office visit I had with my GI lasted 10-20 minutes and this one lasted 2 hours. Basically, I was leaving there with a scrip for LDN or I was going to find a new GI. So far I have been on it for 2 weeks and have gone from 3 entocort a day to 1 a day and am feeling pretty good, probably the best I've felt since last year.
 
LodgeLady-its really ridiculous that a doc would tell you no as though its not up to you...you ALWAYS have the final say in your own care and if you wanna try LDN I would tell the doc to shove it and find one that takes his patients' seriously when they ask for their doctor's help
 
sorry your feeling bad kayleigh, MMJ helps with my joints a lot but there are some days when I cant get out of bed...funny thing is my PCP says shes not sure if I have arthritis bc my RF was slightly high but not enough to def indicate RA and my CRP was a little high but that could be from inflammation in my guts (nevermind the debilitating joint pain I complain of) but she started me in physical therapy this week and the physical therapist told me within 15 minutes of my 1st session that she thinks I have arthritis and that I'm going to need hip surgery, sometimes I can't decide which is worse Crohn's or arthritis from it...have you thought about adopting at all? there are a lot of babies out there that need loving parents and I couldnt imagine how hard a pregnancy would be for a perfectly healthy mother let alone someone going through as much as you are
 
I would like to have a child of my own if it is possible, sounds selfish but that's what I want to try first.
We have friends who were not able to able to have children and tried everything, they are now going through the adoption process but it has taken them well over a year and they still have not yet been able to get to the final stage of adopting a child. They ask so many questions and have put them under so much stress I don't think I could handle but they are a strong couple and deserve children so much they will get there. It's not something I would rule out I just want to try this, it might turn out I am not able to have children for another reason I don't know yet but I don't want to give up that dream.

Than you for all the info Kev it does seem like it is a struggle to even get Drs to attempt ldn and the only pharmacy I saw on the ldn.org website is in Glasgow so some distance. From what I have read it is meant to be safe during pregnancy as well and probably more so than steroids or any other type of drug. I will give it a go asking my Drs see how far I get.
Thanks all
 

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