I am at this nasty stage of falling asleep when my body needs rest but now awake as all night as I am sore.
Anyway over the last week I tried every organisation in my area for help with filling in a pip form, what a joke as I am now stuck in my little village in the middle of Devon.
Totally isolated when at home and do not see people for days but I have now managed to get the hospital to fetch me.
Does anyone know for how long I must take methotrexate as my hair is still falling out quickly. At this rate I will not have a hair on my body.
The hair follicle cycle is around three months - so what is falling out now is the result of what happened in the past - so have hope that your treatment will help to reduce the inflammation in your body and settle things down. Methotrexate is a long term treatment...
You sound really fed up and perhaps lacking in support. Please keep asking for help and advice and post on here with any thoughts or queries. You might want to ring the NRAS helpline too - lots of people have said how helpful they have found that.
My skin is peeling like a snake but my gp said that I must be patient as there is too much going on. Even the inside of my nose is now peeling. Fed up yes, keep looking at my motorbikes and so wanting to go for a mad blast, just once
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I have just put up a post and enclosed a photograph of my skin, my knuckles are worse. Tried using vitamin E creams and others but it does not stop it.
Hey Minty, sorry to hear you’re having such a tough time. Do you have any medication for the depression? I have some issues in that area, and I take an older tricyclic anti-depressant because, when taken at night it helps you to sleep - it’s called Doxepin in Australia. It also helps with mood.
I don’t take MTX (but I feel it’s soon to be added), so I can’t comment on the hair loss, except to say - perhaps ring your Rheumy/Rheumy Nurse and have a chat about that?
Is you skin peeling because you’ve been out in the sun? I hear you need to use sunscreen with MTX, as it makes your skin susceptible to burning.
What kind of motorbikes do you own? Can you physically ride your motorbike(s) ? What’s preventing you? I don’t own a M/C at the moment, but I’m a motor cyclist from way back - started on a Honda Step-Thru, went to Honda CB100, Honda CB250, Yamaha 650, Ducati Darmah - then a break, followed by BMW F650 x 2. Currently dreaming about a BMW 310GS
Chin up, we’ve got your back, cheers Deb
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A Honda step through lol. My first new bike was a Honda 125 T2 with mag alloy wheels, then to a Kawasaki 759!triple, the original widow maker
I have several bikes, Ducati monster 2018, buell 1200cc short all original and ridden once since new and a blade with launch control. I have always been bad when it comes to power, same goes for my cars, if I put my food down I expect it to move and now.it is not speed but acceleration. Have not been in the sun just peeling all over but more on my hands and feet since starting on the methotrexate . The OT nurse made a polite comment the other week, it did not bother me but she said us women pay thousands for that as I don’t think I have a hair on my bod below the neck and hair on my head has stopped growing and gone very thin.Used to have my hair cut every two weeks but not now. Even my fingernails have stopped growing.
Have to stop riding and I know this as I am a single parent but I can look at them in my garage.
Cannot ride the bikes as I don’t have the strength. Cannot even open a jar of coffee or milk or pull out a plug from the wall.
At least the cottage is on the market and creating a lot of interest as it is sensibly priced and immaculate.
Have a stray cat that visits me here but would love a dog
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Ah, so your guy who’s into the power wheelies lol. I’m a woman who’s more interested in getting to interesting places. Anyways, it’s sad that you can’t ride, so no wonder you’re a bit depressed. Along with recently moving into your home - that’s really tough
When you sell your place, where are you thinking of moving to?
If you’d love to have a dog, why haven’t you got one? That one up there in my avatar is a pic of mine - Italian Greyhound, very small, but active and cheeky - not so much now, as she’s nearly 12yo. A dog’s good company if you’re single, and even if you feel a bit disabled, you can usually get some help, cheers Deb
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I can start them up in the garage as on pot stands. They are all fuelled and ready to go. Same goes for the car but dare not risk it. Power wheelies at 90 mph is my speciality. I used to be heavily into racing boats too but that was big money. Same for horses. Bikes are cheaper.
I have seen the dog on your profile, very cute but there is a stray cat that visits, he is such a blob and is definitely a stray, wonder how he would cope with a dog
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Loved my cottage but if I cannot manage here so buying closer to friends who are three hours drive away as I have Zina to think of as well
I'm on mtx since almost the beginning, my hair keeps falling but be positive because I see it grows again!
Also, last control my rheumy prescribed me seropram (antidepressive) and lexotanil, I was very upset because I was telling him that I was not depressed but in pain and he told, relax we are only going to try it for month. Now, after 20 days of seropram I feel with more energy and started to believe that he might have been right about the depression. I don't see any benefit of the lexotanil but during the day I really am in a much better mood (I still fall asleep whenever my body decides it needs rest but it doesn't upset me anymore).
May be you should try speaking about it with your doctor.
Cheers!!! Fingers crossed for your recovery!!
Crikey...peeling skin doesn't sound good! Do you have a rheumatology help line? Failing that, I would phone your rheumatologist.
Really sorry that you ate so isolated. Do stay in touch.
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Shedding like a snake. I am too tired to get up my stairs but luckily I have a downstairs bedroom as well.
Just thinking
that I have not even had to shave in five days. Ah well back to seethe doctor Monday afternoon and it is costing me a fortune in taxis to my nearest surgery.
I purchased the cottage some 15!weeks ago and ripped it apart, if I had known what I know now, no ways. 18!hours a day working on this place and there was snow outside when I arrived back in the cold UK weather.
When I moved in the downstairs ceilings were on air jacks, no heating, water or electricity,!you could even put your hand through the holes in the bedroom and touch the thatch.
The whole place has been replastered, new wiring, new joists,plumbing as water everywhere,everything that needing doing has been done. While on prednisone I was up the ladders rebuilding the chimney and then painting the whole place. All I had was a generator and an electric heater,It was my soft landing back to the UK. I only went to the doctors with a chronic shoulder pain, thought that I had torn a muscle only to find out it was angina, RA etc.
Put my daughter with an ex girlfriend luckily she has known her since Zina was a baby and the partner is ok or I would have to get social services involved.
Just so tired but cannot sleep. I am more than qualified to recognise depression but do not want to take any more pills. Consultants only specialise in their own field and seem to love prescribing.
Thank goodness I did not purchase a total wreck barn conversion as tried to buy a shepherds cottage off the grid only accessible in a 4 x 4 Main cottage was stunning but no toilet just a long drop outside and solar power. Water was from a private spring.
Sorry you're having such a rotten time of it: early days n does get better than that, honestly. The NRAS booklet on PIP is excellent & free, ring their advice line. If MTX side effects too much ring your specialist nurse/advice line, it's what they're for. Good luck
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I will push through as I always do, no choice. Just not sure to say to my daughter as tonight I lied to her over Skype as she wanted to see me. I guess I need to sit down with her as she will notice the lack of hair. At least I don’t have to worry as she is in good hands. I don’t have it in me just now to tell her as there is too much going on.
I would definitely ring specialist nurse if that bad, how depressing, others on here have stopped taking it because of hair loss (I had loads of other symptoms but not that). They can do all sorts, give advice, reduce dose, raise folic, change drugs etc, etc. I got better response from emailing with concerns and emergency appointment!
After 9 months on it I stopped feeling sick for half the week and down to one day post jab of fatigue/nausea, joints much improved. I know that sounds like ages but when I look back to how low I felt at start, it is such an improvement. I don't know how old your daughter is and wouldn't dream of giving advice on your child: you know her best. There is light at the end of the tunnel even if it doesn't feel like it now, wish you well.
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It is 3:40 and I am awake. Woke up at midnight and took methotrexate plus other pills, put on my Fitbit to watch out as my pulse races, only use it at night. I have noticed since I went on prednisone that my Fitbit recorded the best nights sleep while I was on it for months.
Fed up with counting sheep so best to try to read if I can.
Will read every message left on this forum and see how others cope. While I manage and have a very high pain threshold this is wearing me down. If I listened to my body I would not get up. Just wish people that I could rely on were closer to me. Cannot even get a decent phone signal where I live. My own fault for choosing a remote place.
Just looked at the clock and 4:20
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To be honest I don’t mind the hair loss on my head as have very thick hair, would love to go swimming but not sure if people will think weird as no hair in legs etc. I don’t think I have any hair below the neck line.
I am so tempted to drive the ten or so miles to the pool, I was not cut out to be caged
I agree with the caged bit it's driving me crazy but I'm having a nasty flare up at present and falling asleep all the time, my hair is like bum fluff my mother would have said its been falling out dreadfully then goes all fluffy/ haywire it's not good place to be in!
That's what helps me reading about others not being horrible as I would not wish this on anyone so let's moan away to each other, and still laugh as we are all fighters, do you happen to know the name of the drug that apparently the government will not find for polymyalgia and giant cell I have a friend who works at a well known hospital in Scotland and wants to look into it all for me, I'm not that clever and my poly head is not helping , if anyone else can give me any details please if not I will investigate only he's asked me before he goes on his hols ???
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Sorry minty, my phone is shot so haven't been on. I went to methotrexate update tonight at local hospital & they said hair loss rarer symptom but cld also be due to effects of disease until controlled so fingers crossed for you. My sleep was poor as too, barely managed 3/4 hours at a time despite exhaustion and on here in early hours. It has been much better last few weeks n hadn't even noticed until you said; this seems to have coincided with reduced side effects and joint pain. I am 10 months post diagnosis, on sub cut MTX, which helped nausea after a few months, so hang on in there: everything takes so long with this bloody disease 😄
PS i also do swimming, did cbt course and regular mindful meditation because i am a sad old tree hugger ☺️But it helps: it's a hell if a lot to take on board at first
Minty you petrol head you we are all routing for you yes methotrexate can cause hair loss I like you gave lots of hair, people don't get the pain mine was diagnosed as inflammatory arthritis and fibro, hands and feet, now have bad shoulders apparently that it is is osteopenia, osteoarthritis of auricular clavicle joint, whatever if that is what you have damn painful.
Methotrexate works in most people and would only cause skin peel after sitting in the sun??
Warm water on shoulder I now have a walk in power shower, could get in a bath, but not get out lol arthritis in hips too, great disease, remember crying in pain when you are first diagnosed. I'm struggling to still work, I'm only part rine
Try and use this site as a support network.
It sounds like you travelled abroad??
It is if you don't mind me saying unusual for a guy especially a traveller to have custody?, it must be such a worry,
I'm in contact with a face book friendly from Cornwall non ra with custody, partner died, it is hard even if fit and well as a single parent
Think pip payments hard to get so struggling on working I was diagnosed in 2009 and went from full time to25 hours quite rapidly down to about 9 to 16 hors now.
As you have children give steroid and methotrexate chance to work then try to work 16 hours and then you can get what used to be child working tax credit
I'm not that up on the benefits system
I'm sue someone on here is though, when I'm very bad I dream of claiming pip, I could probably get standard rate?
I have been up all night, my partially my own fault as there was a fire in the village at the electricity substation so they were working on it all night. I could hear them faintly but knew I would not sleep no matter how many sheep o could hear or count
My hair got very thin with Mtx but I increased the folic acid and that seems to have slowed it down a bit.
I wouldn't worry about people thinking you're odd if you go swimming - it's the fashion to have a hair-free body. A lot of men spend a fortune on waxing etc.
Best of luck with it all.
I need to get it cut very short but I have always had short hair as it is coming out in patches.
There is no sign of it growing again and it has been like this for five weeks. I have not had to have a shave for ages
Hi, sorry to hear you are quite isolated, does your hospital have an RA group you could go to. My hair fell out over a period of time, but now it seems to have settled down, fingers crossed. I am in Methotrexate injections.
Managed to get the nurse at the surgery to take pulse and document my hair and skin,OT did the same and the doc called this evening and wants to see me first thing. Moved my car today, as I needed to turn it around, oh dear managed to kerb two wheels and pinch two tyres. Expensive mistake
Hi Minty, I wake most nights around 3am it’s horrid, then you feel tired during the day. I get sick feeling & headache the day after my jab, and am getting to hate my jab day, think I am getting a needle phobia. But when I think how bad I was with joints and feeling horrid before taking Methotrexate, so the horrid drug has worked for me the side effects I can put up with now my joints are feeling better. Had to have a hydro cortisone injection into my hip because I developed a hip bursar so painful I could hardly walk at times. That is much better now, so carry on with treatment and maybe things will improve make sure you have a daily folic acid tablet. But do tell your RA nurse that your hair loss isn’t getting better. Hope you feel a bit better soon.
Yes thank for the kind words, just crossbwith myself for turning the car around as my wheels and tyres will cost me about 1,800 pounds. Ah well my own stupid fault as both wheels have hair line cracks and tyres have holes. That’s what you get for driving expensive vehicles and the pot holes in this part of Devon are terrible and I always worry. When they let me drive again I am going to buy a land rover
Anyway apart from that I am feeling 🤢
Cannot even get a taxi to the surgery tomorrow as there justbis not one that is local. The nearest company quoyedb35 poundsjust hoping that they have a local community help system, having to find my way around this place
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Fatigue and depression
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Depression?
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