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
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
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