Azathioprine
Posted , 6 users are following.
Hello everyone, I am currently taking azathioprine. I am experiencing a huge flare of my sjogren's symptoms at the moment I think caused by over exertion, (my dad's had a heart attack a couple of weeks ago, resulting in an emergency triple heart bypass followed by developing sepsis and is still currently in hospital) I have been visiting the hospital almost every day as well as taking care of my one year old son. I am literally exhausted and almost feel sometimes like I actually just can't deal with life! I push and push and push myself until I finally fall into bed each day. I wonder if one day I might just collapse in a heap! My joints ache to the core and my eyes feel filled with grit not to mention the overwhelming exhaustion!
I just wondered how everyone else copes at times like this, I have no childcare on hand to help and I am also trying to keep my business afloat also being self employed. How do you explain to your family and friends how you're feeling without simply sounding like a moaner or a hypochondriac??!
Any advice much appreciated! Thank you x
0 likes, 12 replies
sally86809 jennifer84972
Posted
Jennifer, I'm not sure why you're taking that drug, but it seems that Sjogren's can flare from any changes we make to our diet. Because Sjogren's seems to attach itself to other auto-immune diseases, you were probably already afflicted with something else before Sjogren's reared its ugly head. I find that Sjogren's makes me very tired, but I am much older than you, and I feel awful that you are suffering so. Your Dad being so ill makes it worse. You have to rest. I can't imagine looking after a little one, with everything else you have on your plate.
Use eye drops all the time. Drink lots of water during the day. I make my own herbal concoction which I drink all day long. It has things in it to combat arthritis and IBS. I worked at a health food store for many years. Please look after yourself. Will pray for you.
'Grandma Sally'
jennifer84972 sally86809
Posted
Hello Sally,
thank you so much for taking the time to respond. It is so appreciated and I take any ideas and advice on board. I was first diagnosed aged 26 with Sjogrens syndrome after recurrent flares of my parotid glands that made it too painful to eat. Now I have just turned 30 and still feel I am no more used to this disease than when first diagnosed! I find it a very lonely disease, being young and seeming resonably fit and well to friends and family - I feel although they are aware of my syndrome, they quickly seem to forget about it.
I was prescribed hydroxychloroquine then methotrexate which I could not tolerate either. The rheumatologist then prescribed Azathioprine to be taken daily. I have only been taking these for around four weeks so have yet to see a difference (other than the lovely stomach upset side effects and nausea!) I have been back to the doctor and been prescribed more Prednisolone steriod tablets 20mg daily, I am constantly on and off them, they are the only thing that make me feel slightly more well and give me a little more energy. Thanks, Jen
sally86809 jennifer84972
Posted
I've had health issues all my life, Jennifer. We can still keep on going, even when it's not very pleasant. Right now I am feeling really tired. Lots of church music, singing and playing. I've never had afternoon naps, but this week I had 3. Yuck. I've had IBS all my life and mild asthma. Now I'm an old bat, with polymyalgia rheumatica, osteo-arthritis and Sjogren's. Rest is all important. I told you that already. It's hard to come by, I know, especially with a little one. My son will be 40 this June. I remember those days. He was a preemie, and a real handful. But this too passes. Thank God (and I do), they grow up. When I was on large doses of prednisone, I used to say, "Look out, when I start neighing." They first used it on Thoroughbred horses to keep the swelling down in their poor legs. That's why they race for only a few years and then are put out to stud(or mares as brood...).
I still take 5 mg of prednisone once a week. It keeps the polymyalgia in recession. My girlfriend has chronic fatigue syndrome. She has been on disability since her thirties. She looks great, runs around like a crazy person, and then crashes. She calls those her 'down days.' When you look good, people don't understand that you really are not well. That's the problem. So get your rest and try to ignore those who do not understand.
Sally
lily65668 jennifer84972
Posted
Oh Jennifer, it's hardly surprising you're feeling so exhausted with everything you're having to cope with at the moment - even without the Sjogren's.
I'm wondering how long you've been taking the azathioprine, and whether you felt it was helping your symptoms up to now. Some people are helped immensely by immunosuppressant drugs, whereas others find they just make them feel exhausted. Perhaps you should discuss this with the doctor who prescribed the drug? You shouldn't of course stop it without medical advice.
In the meantime, try and take care of yourself. I hope things soon start getting better.
jennifer84972 lily65668
Posted
Hello Lily,
Thanks for your reply, greatly appreciated! I have been taking Azathioprine for only 4 weeks so far, I was previously prescribed Hydroxychloroquine and then methotrexate, both of which I could not tolerate so am now on these new ones. I have yet to see a difference with them as all of these tablets take a while to start working but have been prescribed 20mg Prednisolone for the meantime. I have my next appointment with my rheumatologist soon so will discuss with her too. Thank you 😃
shaq26875 jennifer84972
Posted
Hello Jennifer
I am on hydroxychloroquine (sp?) .Up to now been on it for almost 2 years non stop . I see rheumatologist every 6 months or less if other symptoms have surfaced and see opthamologist for a very comprehensive eye examination every 1 year (and every 6 months for routine follow up and examination at the retina etc.) I am aware there could be severe side effects to this medication hence all the follow up and blood tests
For severe dry eyes i use a liquigel 2x daily. (I stopped the night use as recently in morning my lids are stuck shut and have problem opening them and they burn.)
If flares get severe then i get prescribed methotroxate (sp?) at minimal dosage as well as hydroxy.
I also drink litres of water daily or i get the some of the symptoms of cystitis without actually having it. But the constant water input helps a lot to ease irritation . This has been ongoing since October.
I would be very loathe to stop the hydroxy because i know what could happen again if i did.
I have Primary Sjogren's ( without other autoimmune conditions) and so that makes me 'lucky' according to the consultant
Have u seen a rheumatologist recently ? Perhaps another visit ?
jennifer84972 shaq26875
Posted
Hello Shaq,
Thank you for your message, I have my next rheumatology appointment in the next few weeks. I was initially prescribed hydroxy and then methotrexate although didn't tolerate either. The rheumy then prescribed azathioprine to give that a go. I have found over the few years since diagnosis the only thing that makes me feel better is prednisolone steroid tablets. I have been prescribed more of those at 20mg daily. I try to drink as much water as I can and also use eye drops daily although my eyes still feel gritty and genuinely hurts to open them when I wake up for around 10 minutes after I get up too. By evening my joints feel like there is a fire in the core and ache right through my limbs. I feel everyday theres another part of me that has flared up or hurts!
Thanks again for your reply, Jen
shaq26875 jennifer84972
Posted
Hi Jen Do u also have PMR ? Sally mentioned it in her message .
I had a blood test recently with CPR rate of 2x normal and normal ESR, however at time of test I had symptoms of common cold ( nose runny, sore throat and a cough which later turned into acute sinusitis.)
however, for last 2 years i have a painful neck, left shoulder and arm.....to the point where even typing or using my arm causes a lot of pain to my upper arm , which goes back into my neck ( so to all intents and purposes I cant really use my left arm without pain) Since my blood tests i have not seen the rheumatologist but just wondered if you have PMR and have same pains? When the shoulder /arm pain 1st started a different rheumatologist said i had pinched nerve, (prescribed Lyrica) at next visit said Fibromyalgia ( different meds) The only relief i get is taking a codeine based painkiller at night and by morning i am ok, until i start the day and have to use my left arm ( i am left handed which doesnt help)
the blood test result for PMR apparently should also show abnormal red blood cell count, mine is within normal range.
sally86809 shaq26875
Posted
Hi Shaq, just read your message to Jen. I use a prescription codeine pill nights, but during the day I mix powdered MSM and buffered Vit. C and put it into an herbal concoction, which I brew every morning in my teapot. I drink it all day long, put it into a thermos and take it everywhere I go. It keeps the pain bearable, helps with the dry mouth, etc. and is as natural as you can get. Codeine bungs up the bowel, so I put lots of flax into the porridge I eat every AM. If you want to know about what herbs I use, let me know.
Sally
shaq26875 sally86809
Posted
Yes Sally that would be great and what amounts of what herbs vitamins etc. Thanks.
i live in the Middle East so may not get here but hopefully Amazon will deliver here (not all suppliers on Amazon ship to us)
Kathy123 jennifer84972
Posted
Jennifer,
I really feel for you. I was in a similar situation when I was first diagnosed. All sorts of pressure, little kids and a mom living alone nearby me with Alzheimer's. I had no other family but Mom, kids and husband.
You are in a tough situation, but you must slow down and do some things for yourself, or you're right, you might just collapse.
I think Sally had the right idea, advising you to get back to your doctor, ASAP. If you have the option, it might be better to see a different doctor, to get fresh eyes on your situation. At the very least, your doctor should consider whether the medication you are taking is still doing you any good, and whether perhaps some of your fatigue is a side effect of medication.
You didn't say whether you are your father's only caregiver, but you mention family and friends. Maybe you can get some of your family to step up and take some pressure off you by making sure Dad gets a visit every day, so that you don't have to go every day yourself. Is it possible to phone your dad a couple of times a week instead of seeing him in person?
You need to forgive yourself for the things you cannot do. Will your family and friends understand? Probably not. You may have people telling you the usual thing: You look fine! That is a hurtful thing to hear when you know you are sick.
If you have a partner, husband or best friend, I hope you will honestly tell that person how difficult things are for you just now, and ask for some help. I should have been much more honest with my husband. At the time, I felt I was asking too much of him. Now I realize he was impatient and I was too embarrassed to tell him how bad things were for me.
It's hard to see light at the end of the tunnel, but your dad's situation will not be permanent. You will get through it and people will still need you, so I hope you can put yourself first, at least enough to slow down and see if your doctor can help.
I wish you the best. Please let me know how things turn out.
Kathy
jennifer84972 Kathy123
Posted
Hello Kathy,
Thank you for taking the time to reply. Your message brings a little lump to my throat as reading how things were for you reminds me of myself. I have always been taught to be a people pleaser and put others first which I always do eventhough I know I shouldn't. I find it so hard to talk about to anyone and worry I will come across as being over dramatic, depressive or a hypochondriac. I have two elder brothers and a twin sister but all of which do not live nearby. My husband has recently taken on more responsibility at work and so is working yet more hours, six days a week! I find it hard to ask him for help as he sees the situation from the point that he has been at work all day and is tired himself. I think to myself the only time I would get a break to actually properly rest would be to be hospitalised. During flares and wish I could just have time to recuperate. Although I end up going the doctor and asking them for steriods as these are the only drug that provide a temporary relief of my symptoms - especially the fatigue. Once I start taking them I have noticeably more energy and although other symptoms remain (dry eyes, muscle aches, inflammation in my joints) just the relief of the brain fog for a couple of weeks is amazing. It is a catch 22 situation though as I then feel the need to cram everything into those 'good weeks' to catch up on all the chores, my business etc. Once I finish the tapering course of steriods I feel ok for a period of time and then it starts over again!
My friends are currently organising their weddings and excitedly message me photographs of bridesmaid dresses etc they are also messaging me often trying to arrange weekends away for hen do's. I hate committing to plans so far ahead as I don't know how I will be feeling at that time, so end up ignoring the messages instead of replying as I don't know what to say. Like you mention all I ever get is that I look well and I find it so frustrating. Sometimes I feel quite low about the whole thing knowing its probably going to be on and off forever. But then I feel guilty for feeling this way as I could have things that are much worse. Sorry for rambling, it is nice to get off my chest to someone who understands!
Jen