Tired, all the time? Whats happened?

[Ken Reisenwweber]

I have periodically experienced the fatigue through the day. Sometimes it just is. Sometimes it is exasperated by heat. I’m on Soliris and mestinon.
Remember this is a snowflake disease and no 2 cases are the same. I’ve found also no 2 days are the same

[paul spychalski]

So true! All most can do is trust that their Nero. has worked w/MG patients.

[paul spychalski]

Bad spelling, fat fingers.

[ivp]

i am tired all the time. in the mornings i feel, i could stay in bed for all day, in the evenings i feel very tired. during the day i am nervous, which i did not experience earlier (prior to gMG) but i agree, that no two days are the same.

[Stanley Martin]

I have the same problem. I have had MG for 5 years.
my need for sleep is unbelievable I can’t sleep at night until about 3 o’clock in the morning and then I sleep until 11 and I get up take my medicine which is Azathioprine 50mg 2 1/2 tablets and my Pyridostigmine 60mg two tablets three times a day and I’m constantly tired. I could sleep all day I need to get up and out of bed. Plus my vision is getting worse and very sensitive to sunlight. My eyes constantly water and itch Thank you.

[paul spychalski]

Ask your Nero. about Trazodone for sleep.

[John]

Thanks for the replies and Stanley, I’m sorry to hear this about you but had to read it twice, as thought that was what I had written, as virtually identical. Last night, couldn’t sleep as per most of the other nights this past month, until 6am this morning and just got up.

But in one respect, pleased to hear I am not alone, as the eye symptoms you described are, as I said, identical?  I thought it could also be part vaping I do(as after many years having difficulty giving up the nicotine as went cold turkey on ciggies last September after 50 years of smoking) but now believe it’s MG. As a matter of interest, have you had a recent blood test which revealed anything? My WBC is still quite high and dehydrated (anemic) somewhat, and the object now if for me and others to try and found out what we can do about this?

I mention this as when I was on 50-80 MG of Preds per day when my condition was really bad, I couldn’t sleep at all and was told it was the high steroid dosage and when I reduced, it would get better, which it, did until about one month ago or so. My weight has ballooned by about 35lbs in 6 months and just still too weak to exercise properly, albeit did manage to do 3 miles of light running on the spot, this morning, as desperately trying to find an answer to this. Love my food as well, which doesn’t help with weight loss(but actually shouldn’t complain too much, as many know as been there, couldn’t even swallow it, yet chew it in January this year)

Had two monthly sessions of Vyvgart. First month was a fantastic improvement, second not so!

Lastly, not sure if there is a conflict here as Neurosurgeon scolded me somewhat for tapering off too fast on the preds which I did, as Retinologist blames the steroids for my deteriorating eye condition as trying myself to find the right balance through my own common sense and yet as many here have already said, we are all trying to find the formula to somehow keep us in check with this disease but it changes daily and affects all of us differently. But it’s the tiredness factor which is the main topic here that I would like to also improve upon and welcome all suggestions.

Seeing the Eye guy on Wednesday plus another blood test next Friday and should know more by then. Good luck to all.
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[Frank Morrow]

John I agree that tiredness is a common symptom of gMG and also the need for good sleep. I have found that having a CPAP machine is invaluable for getting good restful sleep each night. It may not be the quantity but the quality of the sleep.

I have been using Methotrexate for 4 years and Vyvgart for about 10 months and just finished Week 4 Cycle 3 on Vyvgart.  I have found this drug combination helps my fatigue and tiredness.

Your Neurologist or PCP should be able to find a way or sleep lab to evaluate your sleep patterns and see if CPAP or Bi-PAP is going to help with your sleep.

[Claire M Walsh]

John, I am wondering about a few things. Are you seeing a Neurologist or a Neurosurgeon? I found a Neurologist at my local Medical University who has been taking care of MG patients for over 10 years. I also have a great primary care physician whom I see every six months. Having a Neurologist who specializes in MG has made my journey much easier that yours, and I am not a young person. I’ve had MG for almost 3 years, and Vyvgart is now improving my symptoms drastically. We found that I needed to move my infusions up to every two months instead of every 3 months, and that’s when I felt the change. She also told me, if needed, I could have them every 6 weeks. The  Vyvgart study recommended a 57 day break between the round of 4 infusions, and that’s about where I am. I only need Mestinon 1-2 times a day now, no other MG meds. Vyvgart is the only medication on the market so far that targets the disease not just the symptoms. I still nap on some days but MG is not totally controlling my life.
The  Vyvgart company offers you  the chance to talk with a nurse who is assigned to you and can maybe answer some of your questions. Good luck! Getting the right physician is the key!

[John]

Hi Claire,

Think I have a good team. Neurologist(Asst. Professor at UMI) Opto-Neurologist(One of the best in the country I’m told, (especially dealing with MG) at Bascom Palmer and Retinologist also at BP, plus a Concierge Doctor who acts also as my main PCP on call round the clock if need be.

My Neurologist is great, and I have come a long way with her, albeit she is not so keen on me taking Vyvgart every 4 weeks or so.  Had to convince her for the second session, but she wants to see how I’m doing with the immunosuppressants, monthly blood tests to see if Im going in the right direction and how I do with my tapering down on the Preds before we go much further.

I’m so much better off than so many others here,(so feel very guilty when I read what this dreadful disease has done) but also a type A personality(which actually has its drawbacks) as well as advantages as mind over matter wins with me, it’s just that I’m going through this incredible tiredness and eye stuff that I have never had in my life and feel quite weak, just over the last month or so, and not sure what to do about it, but should know more in the next month. Considering I couldn’t talk properly, swallow, chew or eat just 6 months ago, let alone open my eyelids, the IVIG didn’t help but having the Plasmaphereses exchange did the trick I believe. I also realize that I could have a relapse when I least expect it.

Cannot get totally rid of the double vision at all,(I can now swivel the eyes to control it better) so still have to be careful driving(but was unable to do so up until April of this year,)

So, it’s all good. Have to be optimistic and what with the high original doses in Jan-March of Mestinon which as many know causes rather unexpected rear end(as in gaseous) problems and their consequences, there have been some very funny incidences along the way and I hope the mods here won’t mind me telling this story as we all need a sense of humor. Had a lot of difficulty and still do on the bad days in seeing the keys on my keyboard, plus double vision, in this instance got me into trouble and as you know the i is next to the o!

I own a property elsewhere and was told that the wooden boards of the boat dock were falling apart and required sorting out. Was given the email address of a Contractor in that area and basically wrote to them telling them what was going on and thought nothing of it until yesterday and I wondered why I hadn’t heard back so contacted them and spoke to someone there who actually recalled my email and they thought it was a joke and suggested I read what I sent them….(all I can tell you, was that after reading my email as needed time to find it and said I would call back) spent the next 30 minutes on the floor laughing like a hyena and after that I had more than double vision!! This is what I basically said.

It has come to my attention that my dick is rotten and falling off, and wondered if you would go over there and give me an estimate. OMG!!!! -)))))))))

 

 

 

[Susagoode]

That is hilarious! Thanks for sharing.

[Laurie Eason]

Laughing with tearing eyes!!! I needed that!!!

[TheresaG]

HYSTERICAL

I’m always writing things that make no sense. Nothing like that however!

[Dawn R]

John,

I’m with you!  I too am going thru something and feel like a baby complaining but know others are experiencing this confirms this is not just in my head.  I take Mestinon, CellCept and Prednisone.  I have had rituxan without any results and IVIG that made me very sick.  The first time I went thru IIVIG, I had good results.  This last time has shown no results.  Being seronegative kind of limits treatment options so it is frustrating.  I try to remind myself that it could always be worse!

Good luck to all!

[Steven Lott]

You did not mention Your age but I am 68 and was told I have MG last September a month after having Covid and Yes I was Always High Energy but No longer. Thankfully I am Improving and I was in Serious condition when it kick in. I have learned to listen to my body and some times take Naps in the afternoon which I have never done before and adjust my schedules accordingly. In my case being Summer you have the Heat; wipes Me out, unknown Covid side effects, medication Side Effects and my age. But Your Mental State Is the Upmost Importance I try Not to think about my Condition and Try to Improve myself Naturally as much as possible. Diet, Exercise, Sleep and trying to stay around Positive People; keeping the Faith. God Bless & wishing All a continual Healing.

[paul spychalski]

The best to you too!

[John]

Hi Steven..

 

I’m 71.

[S. R. Prasil]

Double vision is a bummer! LOL How are you doing with quitting vaping? Your lungs are so important! As an ex-smoker (33 yrs off), I remember how hard it is to quit. I still dream about having a cigarette ever so often. Hang in there!!!

[John]

Not doing too well quitting vaping but trying the Nicorette Gum as we speak. Seem to go in 2 days bursts without and then in a weak moment breakdown and vape myself into oblivion. Also trying to not take any tablets(preds plus Mestinon) apart from the Cellcept) to see if the eyes get better, just as a trial run, but probably wishful thinking, as Neurologist would not be happy about this and yet i get conflicting reports from Opto-Neuro guy who states the high dosages of Mestinon not good for the eyes(im only taking now 9o MG 3 times a day) and the Retinologist guy says the steroids are causing this, so just confusing me somewhat…..

Trying to take matters in my own hands for a few days. Also did start working out a bit(push ups) and now suffering from back and stomach pain somewhat from straining….Used to do about 50 a day, can just about do 10 plus used to be a 36inch waste and was shocked as I can’t get a single pair of pants up past my waist let alone do the zip up..42 inches now! Disgusted with myself as when on 80 MG of Preds all I did was eat throughout the day and night but should have had more self-control.  Oh well, onwards……

 

Trying though…..? Perhaps too much. Deep breaths lad, in and out slowly_-)))))

[John]

Update, still very tired but now something else has cropped up. Not only am I having double vision like many others and it will not go away but in the last three weeks everyone’s face is distorted, bloated and noses three times the size. My Neurologist just made me take a brain MRI thinking I might have something called, Prosopometamorphopsia! WTF. I had to look this up. Thought MG was rare, well this is off the scale if true. Awaiting to hear the results but wondered if others had ever experienced this and Mods, not sure with the new web format if this was the right place to post as really wanted to start a new theme and wasnt sure how to, so move pls if appropriate.

[Jinnie]

It’s a known, but uncommon side-effect of Cellcept.

I have issues with tiredness. It puzzled me for a while because it was not the same as the Chronic Fatigue I experience when my autoimmune issues are not properly managed.

Then it became unbearable. I was sleeping 12 hours every night and needed to take a 3-4 hour nap in the middle of the day. Even in between I was drowsy. With ADHD, I’ve never needed caffeine. But eventually I needed a cup, later 2 cups, of coffee just to function during the hours I was awake. Eventually 2 cups wasn’t enough, but I couldn’t handle any more caffeine since it was worsening my already unmanaged ADHD.

I started researching my meds and discovered that Cellcept has tiredness listed as a side effect that you should immediately tell your doctor about. Additionally, a friend of mine told me of something she knew who had similar side effects from a medication and she was prescribed a stimulant typically used for ADHD.

Right before the tiredness got worse I had to change PCP. The new Dr refused to believe my official diagnosis of ADHD or to refill my Adderall. She said she would provide a referral to a psychiatrist to confirm my previous PCP diagnosis and manage the Rx, but then would never respond to my follow-up requests for the referral. At the exact same time I had to doubled my Cellcept dosage after 2 Myasthenic Crises and 2 hospital stays in 2 months.

I told my Neuro at my next visit, which just happened to be right around the time of my discovery of this side effect and the conversation with my friend. I could tell that even my Neuro had to look it up and said it was a rare side effect of Cellcept. He got me back on my ADHD meds until I could find yet another PCP.

You know what? The stimulant worked! I was able to go back to leading a normal day instead of my life being being eaten away by tiredness.

For the past 14 months, every morning I still struggle just to wake up. I keep my stimulant by my bed. When my alarm goes off, I take my stimulant and go back to sleep for 30 minutes until it kicks in.

Unfortunately, I think the stimulant is losing its effect. Over the past month or two I feel the tiredness returning and ruling my life. But I am on the max dosage, so my symptoms may be more severe than others who experience this side effect of Cellcept.

I hope this helps!

[Barbara E.]

To me, the extreme fatigue is the worse part! It makes everything seem mountainous. I’m working with my neurologist on how to ease this and other symptoms.

[Dev keshav]

I can empathise with you and everyone. I’m 70 years old now, have had MG for over 5 years. I was on azathioprine and Mestinon. I was just accepting that I should live with the side effects and count myself lucky that I could manage. Cramps, stomach problems, sweating and general tiredness on top of every day being different on bulbar weakness, swallowing and vision difficulties.. But then it became too much. I was getting cramps all over my body, even from just moving when sitting. So I stopped taking mestinon. I don’t have a neurologist because I moved to a new town a year ago and the neurologist who comes once a month won’t accept Medical Insurance. He wants cash up front. Anyway, I don’t have much faith in doctors so I decided to test if I can manage. And, the cramps stopped, no sweating. I am ok on just the azathioprine, except that I’m tired all the time. I read up on papers presented by researchers and believe that the mestinon stopped the normal work of “cleaning up” acetylcholinesterase enzyme does in the cleft of the receptors and this lead to the excessive cramping. So for now I have to live with tiredness. I feel like you do, but rather that than how I was before. I know we are all different and many of you have excellent neuros etc. This is just my life and experience.

[TheresaG]

As you decrease the prednisone your symptoms are going to rebound. I had to reduce from 13 mg to 7 mg and it took a year to not experience symptoms aka fatigue. Try going slower. I actually can take an extra 5 mg every once in awhile when symptoms are bad without the nasty side effects.

It is a true balance.

[John]

interesting..thank you…..