Insomnia methotrexate?

[Shazz10]

Morning all

I just wondered about insomnia with methotrexate. I had what I thought was insomnia on steroids but this is different. I can get to sleep no problem but wake up sometimes within 20 minutes with a jolt and a panicky feeling. It's awful and I'm afraid to put my head back down to sleep. Has any one else experienced this or have any tips how to overcome it.

Thanks

Sharon

[Eiram50]

Hi Sharon

I have done what you describe since diagnosis. I have no problem

Falling asleep but for the life of me, cannot stay asleep! As a rule, I'd say In total, I usually get about 3 hours a night .

I have had sleeping tablets to try to encourage a sleep routine, to no avail .

I would agree that since beginning methotrexate a few months ago, my sleep has probably become worse.

I'm sorry, I've nothing to offer in terms of how to make this better but just wanted to say hello as the nights can be long and lonely!

Hoping you can get something sorted soon.

Marie

[Shazz10 in reply to Eiram50]

Hi Marie

Thanks so much for saying hello. Sorry to hear you are suffering from insomnia too...it's awful isn't it? The panicky feeling I get when I wake up is new though, finding that hard to cope with. Terrible headache too...probably from lack of sleep.

I've given up in bed now and am propped up on my recliner chair hoping I might dose off for a little while whilst watching some boring TV.

Good night Marie and thanks again for saying hi.

Sharon

[phil_54]

Hi Sharon

Yes i also have very irregular sleep patterns i cannot sleep in bed for long periods i become very restless and most of the time find it easier to sleep in the armchair, Just like Eiram60 i get on average 3 hours a night, following my last review with consultant she prescribed Amitriptaline tablets which seem to help i would put it down to the condition and possibly MTX basically these days i just grab any oppurtunity to rest or catnap just to try and overcaome the tiredness.

Sorry i cant be anymore helpful but good luck in the future.

[Ali_H]

Hi,

Yes getting a full night's sleep has been a problem for me also (pre - methotrexate and post!). One thing i do is have a relaxing track or two on my IPad and let it play in the background so at least i am relaxing. Sometimes taking piriton helps for a few nights in a row and then the effect wares off and i have to give it a miss.

I always go to bed at the same time and have blackout curtains as recommended after a warm bath and a warm cuppa but some times to no avail!

Sleeping meds give me the heart rate of a top athlete and i start passing out... not recommended!!

I hope you find something that works for you soon.

All the best

Ali

[Kerry3010]

Hi Sharon

I find it hard to fall asleep. I am on Methotrexate Injection 25mg. I can be 2.30 in the morning before I fall asleep and then it is pure exhaustion.

I have woken up, like you in a state of panic and been having awfully realistic nightmares. I also take cyclizine. I mentioned this to the Rheumatology nurse and she said waking up in a panicky state can be a side effect of methotrexate and cyclizine.

I hope this puts your mind at ease a bit. With a constant fight with pain, fighting to sleep is just not what you need.

Take care

Kerry x

[Joy_1]

Hi

On MTX day I take my MTX about 1 hour before going to bed. I eat half a small bowl of porridge, pop the pills and then the other half of the porridge.

If I take my MTX earlier in the day, even with my dinner I just can't get to sleep till about 3am! The MTX does not interfere with my sleep on the other 6 nights of the week.

[Holycow2700 in reply to Joy_1]

I have the same problem as you! My insomnia is only on the night I take the methotrexate! I often will take 2 benadryl’s And usually sleep well after that, but it is no guarantee!

[Joy_1 in reply to Holycow2700]

Hi

It's funny reading something I wrote 2 years ago.

I now take my MTX via jabs and not orally any more. The struggle to sleep on 'MTX night' disappeared once I moved to jabs.

Joy

[LittleBitTexas in reply to Holycow2700]

I am 3 days in to taking my first dose of methotrexate and I can not get to sleep. I hate this so like you I decided to take a Benadryl and I truly hope it helps. I also take Xanex and tramadol and I notice tramadol does not seem to work as well. However the relief from nerve pain , stiffness and psoriasis from methotrexate is unbelievable. I’m in for a bumpy ride and so glad you and others post on this forum! It’s nice to know I am not alone.Hope your doing well.

[Shazz10]

Hi everyone i hope you are all doing well this evening​. Thanks for all your replies. I eventually ended up speaking to rhuemy nurse about constantly waking and not being able to catch my breath and she advised a trip to GP who checked chest and said all clear but I'm not to take mtx again til they have bloods back which I also got taken today. Hopefully its no big deal and I can go back on mtx asap. Have reduced steroids down as planned and am now in 7.5mg which I'm glad about.

I managed to stop smoking too....i have been off them for over a week now and finding it remarkably easy... But maybe even nicotine withdrawal is causing insomnia and breathless ness??

Anyway felt that putting my body through various medications and worrying about side effects was all a bit pointless if I continued to smoke so decided to give it a real effort. So I'm grateful to having this RA diagnosis that it finally focused my mind to do something about smoking instead of putting it off til tomorrow...for 30 years!

Thanks again

Sharon 😀

[LittleBitTexas in reply to Shazz10]

It is funny you say that it help you quit smoking because I find that I am not wanting to anything neat my mouth. I had to force myself to eat and drink water. And I can’t sleep... hope your still of the cigs

[ethnti]

I believe I recommended it somewhere here already. But It bears recalling yet again. The inductive or guided hypnosis is a tremendous cure for insomnia. When I had my intensive chemotherapy course it helped me really a lot in keeping myself steel functional and rested. There're tons of therapists recording sessions. But I would suggest this one sleephypnopill.com/. It fixed my stress and nightmares.

[Farmformyhealth9596]

I have trouble staying asleep. Absolute exhaustion and then wake up with a start a few minutes after falling asleep and then I have trouble getting back to sleep. My Lupus doc told me he thought it was from having both Lupus and Fibromyalgia. He put me on 10mg amitriptyline. He increased to 25mg. I decreased back to 10mg because 25 made me groggy. But it would help keep me asleep and helps reduce migraines over time. I take the injections fo methotrexate on Fridays so that it doesn't interfere too much with my work schedule.

Hope that offers a place to start talking to your doctor about it. It doesn't fix the problem entirely but does make the rest of the week easier to rest. I still struggle on Friday bights from the shot being taken close to bedtime but it minimizes the nausea and stomach issues from it for me. Does anyone else have weight loss from the shots? I used to be on the pills but stopped because of coronavirus and the fear with my cell counts being compromised (I have severe chronic neutropenia also ) but that let Lupus go after my kidneys and now I do the injection weekly and see if I have to add more on the 7th to my treatment plan to try to stop the damage being done by Lupus to my kidneys. So I was wondering if I should be concerned about dropping that weight from the shot. I have been on it for almost 2 months now and lost 12 pounds the first week and have lost a little each week since. I am trying to make sire I eat since it ruins my appetite entirely. But in total lost 20 pounds. I have been eating ice cream and chocolate every day to minimize the weight loss because it is scary to my hubby for me to lose so much. Anyway I was wondering if others had the same issue because the pharmacy when I asked them about weight loss being a side effect acted weird and said no and told me to go get blood work done ASAP. My hematology oncology doctor is putting me on granix to boost my ANC and he said weight loss can be just a side effect but contacted my doctor for my Lupus. So I just want to know if I should be concerned about it and if you stop losing weight from the shot after taking it for a while?

Thanks for sharing and if you have any other questions that I may be able to help with please message me! I will share with anyone any information that zi might have. I believe the more we talk to each other about side effects the better we can handle what happens and be prepared for things

Thank you!!

[JenniferBut]

Omg. Same. Awful but I didn't put 2 and 2 together. Hmmm

[KittyJ in reply to JenniferBut]

Jennifer this post is 7 years old so you may not get a reply 😊

[JenniferBut in reply to KittyJ]

oh wow. I think I saw that post but then thought I would make a new one to see if I got any hits. New people come to the site all the time so you never know