I know I haven’t posted for a long time. I have been struggling badly this year with my leg and my gut and thus far no end in sight.I hope to start Azapriothine next week but I am very apprehensive given my bowel and stomach issues.
However on the positive side I have managed to continue my pottery class and thought my latest wonky potter creation might give you a smile. It is a figurine of my boy Skye on a cliff top to go with the one I did of Finlay.
I send you all lots of love and hope that you are all doing as well as you can and looking forward to Christmas xxx
Written by
CecilyParsley
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What a happy and creative piece of pottery well done. I admire that you are continuing to do your classes. It's great to do something constructive which gives us pleasure. I've recently started Azathioprine - started low at 25mg and now on 50mg (which I suspect isn't enough as still have pleurisy and pericarditis breaking through). I did get some very sharp tummy pains but it settled with Omeprazole. It could just be the burden of drugs on the stomach with Hydroxychloroquine, Adcal, iron etc and the AZA just tipped the balance. I do so hope that you give it a try and fingers crossed it works fo you. x
Thank you so much Rosie. I hope the Aza works better for you on a bigger dose. My worry is that initially they suspected a partial blockage of the bowel, now they think more of a motility issue. I just stopped being able to go to the loo and was bounced between the medical assessment unit, A&E, the GP, the Rheumatologist, Bladder and Bowel Nurses. I was given five laxatives a day, suppositories and even went for colonic irrigation and nothing. I have never had such gut pain, discomfort and nausea. In the end I refused to take the laxatives and started eating 4x shredded wheat a day,Liquorice, figs, plums, Rivita plus all my usual veg and slowly my bowel is working again but my hernia has doubled in size, bending over gives me severe pain and shooting pains up the rectum. If I eat salad the bowel stops. I am at the point where I am gagging eating the fibre and acid reflux stops me lying flat. I am anxious the Aza will make things worse and despite an urgent referral to the Colorectal team, plus a letter from my GP and two emails from the Biwel Nurse I am nit even on their waiting list yet. I am seeing my GP today to ask advice before starting it Monday. Thank you for the compliment and the reassurance much appreciated xxx
You are certainly going through a lot. Is it Lupus related do they think? It's so hard to know how we are going to react to a drug. I certainly can't tolerate Methotrexate - it caused overwhelming fatigue or lefunomide (sore throat within a day). Good to chat with the GP but sadly it is so trial and error. Waiting lists are horrific at the moment, lets hope that you get seen soon - perhaps with some extra pressure from the GP? x
My leg is even worse ..on a moan roll now. I have lost 70% movement in it. It won’t bend so stairs make me scream, morphine won’t touch it and I have had to reduce the dose because of my bowel. 1-3 hours sleep a night. I cannot walk more than a few limped steps, cannot stand to do my baking, cannot sort my garden, walk my boys it is murder. Hence the Aza. I sincerely hope it works for me 🤞🏻. Thanks for listening. I am a miserable wretch xxx
Sorry to hear you have not been well. Love your pottery work🥰
Have you seen a consultant orthopedic to get a assessment or MRI or CT of your leg ? Is it just one leg or both?
Something like this is not normal. I have been struggling to walk and was told by NHS Physios and spinal team there was nothing wrong with my hip or spine. Until I saw 2 private consultants one for hip and for spinal they said I had a tear in my hip joint and also I have hip dysplasia and malrotation of my lower leg. Getting my hip done in Jan surgery was postponed this month because of my chest infection. Especially your knee is it effecting your hips as well? My spinal is a little complex . I had caudal injection for now . Had that twice now and it works brilliantly. Once hip and leg is done then I will consider the spine to be done as it requires major work with pins and screws. Which is why I am holding it off.
I was reading through the replies noticed that you are on Colchiccine it is a heart meditation? It was one that they tried to give me when I saw a cardiologist a long time ago. I turned it down. Because of all the what it does to the organs. Unless it is absolutely necessary to take it Colchiccine yes but if you can live with out it or have an alternative drug that would be better. So my choice was to live with out it. As I have lived with a heart murmur for a long time and I feeling my adding a drug will only make it worse . That is how I took it. It made no difference to me to not take the drug both my husband and I agreed on that.
Colchiccine is really not a great drug to be using for cardiac patients. It is poison really. Poison to our body. How could any one say that is a good drug for the body when it damages all the organs.
Thank you so much. I try with the pottery but everything is always wonky because my fingers are numb and tingly and I have no grip. The best part is the other potters we get on so well.
Wow that is amazing. Thank God you got to the private specialists. I have had an x Ray and a Doppler. My GP has written to the Rheumatologist and the Orthopaedic Surgeon requesting an MRI but no response yet. Sadly the GP can no longer pay for them. I have had a physio assessment and had two months of twice weekly Chiropractor treatment and no one can understand why the leg will not bend or find what is causing the severity of pain. I have two bone on bone knees for the past eight years. My right knee had a cracked patella and my left kneecap is loose on the one side. I have had 6 pre op assessments for double total knee replacement and been turned down every time. Always something wrong with me. I keep telling them that if they wait for me to be well I will never have the operations. I have put back on four of the seven stone I lost to have the surgery because I now cannot walk more than a few minutes, my right leg gives out so I have repeated falls and now my left leg will not bend. It is dire really.
The Colchiccine is for my Bechets and although toxic it does help. Prior to taking it I was getting oral, nasal and genital ulcers monthly, this reduced to every few months until recently when the stress of the leg pain and the gut blockage has caused repeated problems xx
Have you tried little exercises with your fingers with a small soft ball by squashing them with your fingers. Just a few times in the day especially in the morning just to limber them up. Whilst it will be painful at first once you get started they limber up and get easier . Just the same with the rest of the body. . One thing at the time . In moderation . Yes , I do very little exercises. But small one . Just to limber up my muscles and joints in first thing in the day. Gentle stretches help. Just slowly building them up.
Weight is a vicious cycle , because of immobility we gain weight and our joints get stiff as well. And effected by them. Try eating less sugary food . Every thing we eat our body converts to either to fats, or to glucose. Our diet consist of high proportion of fish either oven baked or steam. Sandwiches can consist of tuna , meat slices with cheese ,Or just cheese slices . Fruits and yogurt.
Yogurt gives you very long lasting feelings in your tummy it doesn't make you hungry keeps you going till tea time. Sometimes I skip the sandwich and just have the yogurt and a fruit it will be sufficient.
As for your knees , pls do call them back and chase them up about your surgery. It is important that you get it done.
They are only postponing because of your safety. They want to make sure you come out the other end safe and sound and will recover well and be able to do the physio as well.
I ended up private because we have medical insurance through my husband. We are just fortunate in that way. If not I don't know how we could have afford the private facilities.
Have you tried alternative drugs for Bechet? There is 2 new drugs available on the market . While they seem to push Colchicine more than these new drugs. I am sure you must be up to speed with the latest .
Do you get any support at home? Just wondering because if you are struggling you really need to let your GP know you need help at home -Some support.
Hi my thumbs dislocate readily, and the numbness in my fingers has never been explained. I wear compression gloves at times and splints at times but of course I cannot wear them to do pottery.. prior to this leg issue I did 40 minutes on the treadmill every day for months. Prior to that I did the gentle exercise class twice weekly and walked small walks with my dog as well as attending the OAK classes and Pulmonary rehab. Now I can hardly walk a few steps unless I am on steroids.
I do not eat many sugary foods I am a vegetarian and rarely eat processed foods I make everything from scratch normally even bread. Now I cannot stand up to do it but hopefully on the Azapriothine I will get my life back.
Yes I have a carer nine hours a week as well as my husband. She has been with me for 8 years now and has become a much valued friend and changed my life for the better.
There is no way currently I am well enough for surgery and starting the Azapriothine has to take priority. When I have my knee surgeries it will be with spinal anaesthetic which is far less dangerous. I had my nasal surgery in February under local at my request. It went ok until I haemorrhaged so that is always a concern with the Behcets . If I can just ease the dreadful pain that I have had since February, be able to walk and recondition my leg muscles I will be far more able to cope with the post op exercises.
I am pleased that you did have the private option. I have had quite a few initial assessments with a Consultant that way given the dire waiting times. Roll on the Lotto win. I would book myself in for a month and get sorted lol xxx
By the sounds of it you are in a really bad way , my heart goes out to you my dear. Will certainly keep you in my prayers xx air hugs to you my dear CP . Will be thinking of you over the weekend 😘 😘
It all becomes such an unrelenting circle. I honestly don't know how you manage. You are not on a moan roll but just telling us what is your 'daily bread' and it ain't that tasty at present - I can only send you virtual hugs.
Are you on any other immunosuppressants at the moment? I was just on HYX -400mg so 100mg above the recommendation for my weight, even so, the damage to my pericardium etc was going on. I kept saying how much pain I was in but everyone (including me) just thought it was my ribs (I don't know if you remember all my posts about rib pain / costochondritis - ha ha, if only).
The AZA is making a difference. I have more good days than bad ones, less chest pain and I'm not at the 3 month mark yet. I gather it's not so good at joints but at the moment it is organ damage that is the most concern. I do so hope it does work for you. xx
Thank you for understanding. It means a lot. I have been a real misery this year. It all kicked off with my nasal surgery and has not let up for one day. I am on Hydroxy 200 mg because I had fluid on my maculars when they upped me to 600 mg. I am also on Colchiccine twice a day which is quite toxic. Just back from the GP she is going to chase the Colorectal Team and refer to the Gastro team. But she feels I really have to start the Aza next week as I look dreadful, the pain and lack of sleep are taking a toll. Let’s hope things improve for all of us next year xxx
Have you spelt Colchiccine correctly? I only ask because Colchicine is one of the drugs that my consultant told me not to take with AZA - just thought I'd check with you as it's there on the NHS website 'Speak to your doctor before starting to take colchicine if you take:
azathioprine, methotrexate or any other medicine that can affect your kidneys, your liver or your blood (check with your doctor if you're not sure)
I'm sure that it's all been checked or perhaps it's a different drug. Hope I've done the right thing in bringing it up. xx
Funnily enough I asked the Rheumatology Nurse yesterday if I should continue then Colchiccine as I read the drug info and it said not to take with meds for gout. She assured me that I had to take both. Honestly though I have little faith in her. She is rude, impatient and blatantly lies, she patronises me and talks over me. I sincerely hope that I have as little to do with her as possible xxx
Sounds like a real treasure. It is so draining when we have to fight the disease as well as someone who is meant to be helping us. Fingers crossed for you and do let us know how the AZA goes when you feel able. xx
Sorry to hear of your continuing struggles, I do hope that you get some better luck soon. Well done on keeping going with your pottery though and as always you have managed to produce a brilliant quirky piece. I particularly like the way you have done the patchwork of fields. All the best to you. xxx
Hi Suvi yes thank you I know all the risks but feel I have to try it. I am existing currently not living and I know that some people do very very well on it. I just have to be monitored careful and be sensible xx
Hey Cecily so sorry to hear you've been struggling but great to see that you've still managed your pottery class and created a wonderful piece 😊 I can understand your concerns about Azathioprine, I'll hopefully be joining you on them soon 🤞🏻 I do hope they help your symptoms for you.
I can't believe how quick christmas has come around this year, I hope you're looking forward too it also ☃️🎄🎅🏼 xxx
Thank you Haylz that is so kind of you. I would have started it sooner except for this gut problem. I saw my GP today and she was concerned how grey and exhausted I look. She examined me and agreed my hernia is larger and my abdomen is very tender. She is writing to try and expedite the Colorectal referral and also will refer to the Gastro team. She said my diet is excellent it is my gut that is the issue and it might be inflammatory and the Aza will help it. I have to try. Some people have very few issues and I really hope that is the same for you and I. Please let me know how you get on.
Yes I have made some plans for Christmas, and have bought all but one gift and started packing them and writing cards . Gutted I will not be able to put my decorations up as usual on 1st December as to add to our awful year we had a radiator crash off our front wall. Turns out we have rising damp so the damp proofer are coming on 9th December to line , board and plaster the wall, the alcove and the porch. They are also fitting a fan in the attic and cutting a hole in the landing ceiling to force positive air throughout the house to prevent further issues. Once that is done and we clean up and retrieve my cookery book ( currently holding up the radiator) my tree will be up, and the twinkling lights and Strictly Come Dancing will pave the way to Christmas 🎄. I also have a few Christmas trees currently in the kiln that I can paint then put lights inside . I hope you have a fabulous time xxx
Sorry lovely I have only now seen this message. Ah I'm so sorry you've been through all that but I do really hope the doctors are right and that the Azathioprine fixes what you need it too now 🤞🏻☺️ thank you I will, let me know how you get on with it aswell 💕I'm glad to hear you've got most of the stuff sorted for christmas that always helps.
Oh no you haven't have you? That sounds like an absolute nightmare and just what you don't need to add on top of things. Ah bless you well fingers crossed it all goes to plan now and then you can finally get your christmas decorations up and sorted. Ooo they sound lovely please show me once you have them done. I used to do glass jewellery when I was in college and love all things in regards to a kiln.
Thanks lovely I hope you also have a great time 🎅🏼🎄🥳💗 xxx
Thank you Haylz. My first week on the Aza has been mixed. Headache from hell not helped by drilling, banging and being confined to the bedroom with two stressed cocker spaniels lol. I have my first blood test on Monday so hopefully I will be ok. My gut isn’t happy but it wasn’t before I started, my bladder is extremely over active and strangely my wee is like lime cordial in colour lol. Strange for me because I drink so much water it is usually clear. Other than that I just feel wiped out. I guess the increase next week might make things worse but so far so good. I really hope that you have no serious issues on it either. Please let me know.
Damp is sorted, walls lined and re plastered, damp course in porch and fan fitted in the loft. Electrician and plumber next week then I can give everywhere a good clean and put up the Christmas tree 🎄 xxx
So sorry for the late reply things haven't been great on my end. Ah I'm so sorry the first week was a bad one for you on Azathioprine, can definitely imagine being confined to the bedroom with 2 spaniels probably didn't help bless lol. Yeh I get you, fingers crossed the blood test all went good for you and the urine colour changed 🤞🏻
Yes I'm glad that it hasn't been horrendous for you and hope that you've seen some benefits from it. Although with what you're dealing with atm the stress probably hasn't helped. I'm glad that things are getting sorted for you though especially in time for christmas. Hope you had a lovely christmas and new year 💕 xxx
Thanks Haylz. Sadly I am struggling badly with the Aza, the gut pain is horrendous and I am nauseous throwing up bile, struggling to eat. The food we have thrown out this Christmas is a disgrace. Even cyclizine three times a day is only just taking the edge off. I am hiccuping, belching and in real discomfort with y stomach and bowel. No positives to report I just feel more grim by the day and I am nearly 8 weeks in.
Ah no lovely I'm so sorry to hear that you are struggling with the Azathioprine and that it's caused you to not be able to eat all the wonderful christmas food that's rubbish. 😔 Have you spoken with your rheumatologist? Is there anything else they can do to help you with this?
Hope you managed to have a nice Christmas regardless of this 🤞🏻💕
Well you've seen my other post 🙈 but I'll be ok hopefully xxx
It has been rough I won’t lie. I have been a miserable cow. I actually have been told Rheumatology nurses have rung me twice..it didn’t happen and I have my phone lists to prove it. I actually managed to get through to a locum GP on Thursday last week and he prescribed Cyclizine three times a day. Initially it helped but within two days it did nothing. I went for bloods on Monday and was shaking and retching with the nausea so came home and rang the Helpline. Thankfully a really lovely nurse rang back within the hour. She looked at my bloods and told me my kidney function was low and my liver enzymes were high. In her opinion I was on too high a dose and told me to reduce it for five days. If after that time I still have such bad gut pain and nausea to reduce it again and if that does not work stop completely.
She was so understanding and said I should have called for help earlier..I couldn’t tell her about the reason I hadn’t, all the lies and blame levelled at me, the insults that my weight was causing my pain and people my size shouldn’t eat carbs, had I heard of salads? Etc. Anyway she was clear if I do get a worsening of the pain or vomit I must call 111 and ask them to sort it for me to attend the medical assessment unit rather than a crowded A&E..not sure they will but worth a try eh?
Yesterday I ate a whole meal for the first time in ages. I felt very nauseous afterwards but it stayed down so progress at last. Thanks for asking lovely. I really appreciate it xxx
I'm so sorry to hear that, I don't blame you for being miserable going through all that is bound to make anyone somewhat miserable. They make things more difficult don't they? Claiming they've phoned when you know you've been waiting for it so wouldn't of missed it 🙄 I'm so so glad that you managed to get hold of a lovely nurse who actually helped and listened to you for a change. I get it's hard when you've been subject to all that prior why you wouldn't of reached out sooner for fear of it happening again which is wrong as it never should of happened to begin with but I can relate to where you're coming from. How on earth does that previous one think normal people live? Everyone eats carbs regardless of weight, some people are just unbelievable aren't they.
Glad to hear that this nurse gave you advice on what to do if it reccurs too 💕
Ah that's wonderful news glad to hear it worked for you yesterday and you managed to keep it down fingers crossed it helps further for you now 🤞🏻 no need to thank me it's what I'm here for 😊 xxx
Bless you I so appreciate your kindness. You are right of course no one should ever be spoken to in such a derogatory manner. She doesn’t know me or she would know that I am a vegetarian, never eat processed foods, make my own bread with added malt grains, pumpkin seeds and sesame seeds, drink 2-3 litres of water a day, drink soya or coconut milk. My GP says my diet is healthy. I do not have high cholesterol or diabetes I am just forcibly inactive due to two knees that were classed as severe 8 years ago but after 6 pre op appointments they say I am not well enough for surgery. Now they say I am too obese surprise suprise 🙄. If they sorted my knees I would show them how I loose weight. Anyway enough of the moaning I just need to feel well enough to argue my case for surgery. Maybe this year it will happen 🤞🏻🙏🏻 xxx
Sorry for the late reply. Exactly she could never know the things you do to try and help your illness without actually giving you time to explain but regardless shouldn't of spoken to you in that manner. I get what you mean it's so hard aswell with the pain like on my better days I will try my best to do something to try and keep my mobility but 9 times out of 10 I'm lucky to be able to be out of bed.
I've got everything crossed for you lovely 🤞🏻 let's hope 2025 is your year 💕 xxx
Thanks for replying at all. I know how difficult it can be some days. Let’s hope the rest of 2025 will be good to everyone here. Be kind to yourself xxx
I really feel for you, I’m having similar issues with mycophenolate mmf but trying to grin and bear it, I’ve become very constipated with horrendous stomach pain. Woke up yesterday with pain in my lower lung area that wrapped around my left shoulder and really hoping fluid isn’t back!
Oh I am sorry Wendy. I hope that your issues will ease. It is like torture isn’t it? Our bodies hate us it seems and it colours our lives. Look after yourself xxx
Thank you. I read all about Colchiccine when I started taking it 5 years ago. No drug is without side effects but believe me a respite from the painful nasal, oral, throat,oesophageal and genital sores made me agree to and continue to take it xx
Ah sorry you are having such trials. Can only say from my experience Azathioprine has been fine , 100mg a day for 18 years plus hydroxy, and now low dose steroids. Chest issues are my main problem , pericarditis now also on bisprolol for irregular heart .
I have IBS not sure Lupus or drug related but Azathioprine didn't make that any worse.
So I would say give it a try , it takes quite a few weeks to kick in though so bear with it. Regular blood tests are vital of course.
oh that is fabulous to hear thank you so much for the reassurances. You hear such horror stories and I had Seratonin syndrome last year from a pain medication. That was very scary.
My GP has three friends on it and says it has changed their lives for the better so fingers crossed it works for me 🤞🏻.
I have come down with a stinking cold and sore throat overnight. What is your view on starting it on Monday please? I am all geared up for it now, bloods booked, started the Prednisolone so I want to start just not sure now xx
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