A bit confused! : Experiencing loss of confidence... - NRAS

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A bit confused!

Hobbledehoy profile image
39 Replies

Experiencing loss of confidence, brain fog & depression. Does anyone think it could be Baricitinib or Pregabalin? Was frightened that it was dementia til I thought of these possibilities...

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Hobbledehoy
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39 Replies

I get this with prolonged fatigue for me it is symptom of RD. How long have you been on these medications?

allanah profile image
allanah in reply to

Me too ...

Hobbledehoy profile image
Hobbledehoy in reply to

Thank you for replying. RA med couple of years. Pregabalin only this last year, increased 3months from 150mgs once to twice daily, for nerve pain in legs due to degenerative spine.

in reply toHobbledehoy

It might be your meds or a new symptom best get it checked.

Hobbledehoy profile image
Hobbledehoy in reply to

Thank you

precious123 profile image
precious123 in reply to

Me too. I think it’s just the fact that we hurt and have to take so much medicine. Or it is for me I hope. My grandmother had Alzheimer’s and I worry about that. However I do know that when I get stressed out that the brain fog kicks in very bad. I just get in a tizzy and don’t what to do. I have to settle myself down before I can even think.

Hobbledehoy profile image
Hobbledehoy in reply toprecious123

Thank you. That is v wise & kind. I sympathise with you too. My mind did jump to dementia, it's all of our great fear. Best wishes, precious, now & in the future x

wishbone profile image
wishbone

Can't say I've experienced a loss of confidence or depression. Difficult to be certain with this sort of thing, but brain fog and memory do seem to have got worse since I've been on baricitinib. Think my rheumy nurse jotted it down when I told her about it during my last appointment. I also had some serious fatigue for a couple of months after starting baricitinib but that seems to have eased off, or at least it's not as bad as it used to be.

Hobbledehoy profile image
Hobbledehoy in reply towishbone

I'm sorry you're not getting the best out of Baricitinib. It was nearly magic for me, so I count myself v fortunate there. Best wishes for improved health this next year. Did you hear NRAS' recent Webinar with the excellent Prof. Taylor? I think more biologics & jak-inhibitor are in the offing, hooray!

wishbone profile image
wishbone in reply toHobbledehoy

No I missed the webinar. That's really good to know...thought I was down to my last roll of the dice with baricitinib, but it seems like the cupboard is not quite as bare as I thought! :-) Thanks for letting me know.

The increased brain fog I can obviously do without, but even if it is due to baricitinib, I'd much prefer that to being in worse pain as it is doing a reasonable job of controlling my RA. Same goes for fatigue, but as I previously mentioned that's not a real problem.

Good that your issues are more likely pregabalin related seeing as you're doing so well on baricitinibt, which is good to hear.

Take care

Mmrr profile image
Mmrr

I've certainly lost my confidence and brain fog has been a persistent problem since I became unwell. I believe it to be RD related, I'm just not the person I was.

Hobbledehoy profile image
Hobbledehoy in reply toMmrr

Oh, sorry you're feeling poor. Thanks a lot for replying. I'm sure now that the Pregabalin is the culprit for me and am reducing it a bit. It's all an annoying balancing act, isn't it... Best wishes for improvement x

precious123 profile image
precious123 in reply toMmrr

Nor am I my friend. I never had too much confidence anyway but surely don’t now. And the brain fog just makes that even worse.

Dobcross1 profile image
Dobcross1

For me, I believe this to be part of RD. Like Mmrr, I'm not the person I was, and definitely spent a lot of time this year fighting depression and confidence issues - though I'm a bit better since the RD has been controlled.

Hobbledehoy profile image
Hobbledehoy in reply toDobcross1

Thanks for replying and helping me to clarify. Sorry you're suffering yourself. I'm going to halve one of my doses, at least. Trouble is the returning excruciating pain, however I'm a bit nearer surgery. Oh 'eck..!

Best wishes for 2020.

Fra22-57 profile image
Fra22-57

Brain fog is awful.Its annoying and embarrassing when you just cant think.I will try and repeat something I did a couple of minutes ago thinking I hadn't done it.I am on pregabalin too.I find my memory is terrible.you could have test at doctors.I did this where they ask you to remember an address then asking other things then ask you the address again.thing is my husband who was with me couldn't remember it either ! Reassurance from understanding doctor would make you feel better thou

Hobbledehoy profile image
Hobbledehoy in reply toFra22-57

Big thanks for kind reply. I'm doing extremely well on Baricitinib, so that it is indeed the Pregabalin. I thought the symptoms were in the list of side-effects - just needed to bounce it off another human being! Best wishes for 2020.

Fra22-57 profile image
Fra22-57 in reply toHobbledehoy

Best wishes to you too.it took me a while to get used to it and I was so spaced out

Leics profile image
Leics

If you look at the possible side effects of pregabalin then memory loss confusion and depression are all known effects of this drug. I’m on baricitinib and it doesn’t have the side effects you mention for me anyway. I did have a very good friend who had major depression on pregabalin so perhaps it’s that. We are all different and brain fog can be a part of RA maybe an idea to have a chat with your doctor and see what they think. If pregabalin is pretty new to you it maybe the answer to your symptoms.

Hobbledehoy profile image
Hobbledehoy in reply toLeics

Thank you for replying. I've been doing extremely well on Baricitinib, and agree that the Pregabalin is the likely culprit. Best wishes for a (reasonably!) healthy 2020.

Lizzy-m profile image
Lizzy-m

I'd be inclined to look at the side effects of your medication first. It could well be them. But, as the others have said, this disease does get you down and kicks your confidence. Be nice to yourself. Xx

Hobbledehoy profile image
Hobbledehoy in reply toLizzy-m

Thank you Lizzie-m! All the best, good wishes & luck 🍀

Gigi71 profile image
Gigi71

I am on Gabapentin and definitely know the dose I am on 1200mg a day, makes me lightheaded and forgetful, the pain from the severe spinal stenosis is just bearable with taking this. I drink lots of fluid a day and this helps. I’m awaiting an op also. X

precious123 profile image
precious123 in reply toGigi71

Hi Gigi71 I too take gabapentin 600mg a day. My brain fog and forgetfulness is awful. I have severe spinal stenosis as well. I also have to take 4 oxycodone a day to help with the pain. Even tho methotrexate and orencia has me better overall the pain is just a part of life I will always live with I guess. From what I know about this anyway. I’ve had it for 15 years now.

Gigi71 profile image
Gigi71 in reply toprecious123

That’s seems so long with back pain, although I have had erosive RD for 34 years, many ops, Humira and Mtx work well for that. I also take naproxen and low dose steroids. I am unable to tolerate opiate meds. You seem to have accepted the pain, have you ever tried Pregabalin. X

precious123 profile image
precious123 in reply toGigi71

No never even heard of it until I saw you all posting about it. Is that a generic name?

Gigi71 profile image
Gigi71 in reply toprecious123

Yes, brand name lyrica, although I think this name is used in America. It more expensive than Gabapentin, is not the first choice because of the cost. My BIL was prescribed Pregabalin as he wouldn’t take Gabapentin as it had made my sister very ill a few years ago. He is very tired on it, but works well for his pain. X

Hobbledehoy profile image
Hobbledehoy in reply toGigi71

I was on Gabapentin, but the Pregabalin is more effective for my pain. That's on 150mgs twice daily. But have dug out some 75mgs & reduced one dose to see if that works. The old merry-go-round/balancing act! I am well on the way to surgery...

Thank you so much for replying. Best wishes.

Gigi71 profile image
Gigi71 in reply toHobbledehoy

I do hope this works for you, I am banking on the op to allow me to eventually lower the dose. I have been told won’t do much for the back pain, but will improve the leg pain. I have thought about asking to try Pregabalin in case it helps the pain more, and maybe a lower dose. Not sure how your dose equates to Gabapentin. 900mg was okay for being more ‘with it’, but useless for the level of pain. Thanks for your kind wishes and same back to you. X

Hobbledehoy profile image
Hobbledehoy in reply toGigi71

That's what I was told. This year's MRI done, CT check in the New Year, then another conversation. X

Gigi71 profile image
Gigi71 in reply toHobbledehoy

I went through all this last year, MRI in the October, then CT scan and Flexion X-ray beginning of this year and the neurosurgeon decided ok to operate, this was March. I do have Osteoporosis as well, This is at my local general hospital. He told me 4 to 5 months.I have asked my GP to refer me to the Royal Orthopaedic in Stanmore for a second opinion and if okay the operation there. X

Hobbledehoy profile image
Hobbledehoy in reply toGigi71

Oh my life.. you do have a load on... So sorry. At least you're not in with this Noro-virus. Take care hun. We RAs are very vulnerable.

Gigi71 profile image
Gigi71 in reply toHobbledehoy

Thanks, I had that last Boxing Day onwards and believe it or not I ended up with bad shoulder pain. So a steroid shot in March followed by an US in July. The letter from my rheumy explaining the problems went missing, so only found out three weeks ago I had a massive tear in my rotary cuff a partial tear in my bicep and another in another tendon. Caused by degeneration, so yes very vulnerable. I see the pain management physio beginning of Jan, but I go to chair yoga and that helps. X

Hobbledehoy profile image
Hobbledehoy in reply toGigi71

Oh Cor..! You really have a rough deal. Good 🍀 luck Gigi, maybe this is the worst before improvement. I do hope so.

Gigi71 profile image
Gigi71 in reply toHobbledehoy

Thanks for concern. All the best for Christmas and the New Year to you, hope it brings relief to you as well. X

Hobbledehoy profile image
Hobbledehoy in reply toGigi71

You also, Gigi. God bless x

precious123 profile image
precious123 in reply toHobbledehoy

I’m so sorry you are headed for surgery. And thank you for replying. I hope you and your family have a very merry Christmas and a great New Year.

RAexperiences profile image
RAexperiences

I have struggled with terrible brain fog since this all started (either Seronegative RA or PsA though no psoriasis ever. I actually find fatigue the worst struggle of all. I think it’s part of the condition though I had a bout of extreme fatigue when I started leflunomide which lifted but I stopped it cause of tummy problems. I’ve been on baricitinib around 6 weeks...also had extreme fatigue. Hope that lifts, huge tummy and gaining weight. I’ll see how it goes. Some pain improvement. Best wishes to you!

Batteria profile image
Batteria

I used to take pregabalin and it did mess with my mind for a short while and then it settled down and I was ok. It did give me very good dreams and I miss it for that reason. With regard to the biography could you just tell me a little bit about it before I decide to send away for it. Many thanks. Con amore Bx

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