I have been in an awful flare genital,intestinal, nose. throat & mouth ulcers, (now feeling like it’s going back to cranial nerves) Feeling like had a weighted blanket on me all day, feeling of being hot and cold all day. Inconsistent bowels, stomach cramps, inconsistent sleeping pattern.
Days when I can’t lay on my left side as I’m in pain either in my stomach, back or head.
This has all been since March and prior to that it would stay in one area longer and linger. I literally have been from one area to the next with no relief.
In December 2018 rhuemy took me down to 1/day colchicine and I took a slide backwards and in Middle of March 2019 I and my GP decided to put me back on 2/day colchicine when I had the genital outbreak so when I had my End Of March appt with my rheumatologist she finally agreed and said she is leaning towards Behcet’s and so Now I’m on 2/day colchicine and she added Plaquenil I’m into my 2nd month of the combo of (Plaquenil) and colchicine.
It wasn’t until my March appointment my rheumatologist and I were on the same page and now I feel have a more open relationship where she is listening to me and I can reach out and message her she’ll respond and she’s realizing I do meet the criteria. Now it’s waiting to see if the Plaquenil will work and how long I can stay on the colchicine 2/day combination.
My doctors have all cautioned me about getting on prednisone and trying to keep me away for as long as I can (I understand and respect their reasons) as that my symptoms (flares) could come back with a vengeance.
I have had little to know relief since November 2017 about 25-60 random good days and by that I mean my good days were I could tolerate the pain, nothing like before I had prior to November 2017.
I final reached out to my rheumatologist for a
burst of prednisone and she agreed it was time.
My question is how long does this burst give most of you relief?
I know we are all different, but I understand why most go on this for the relief.
Any suggestions/comments would be appreciated for ulcers relief.
This combo of meds together, what side effects to watch for?
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I am so sorry to hear that you are struggling. I can identify with your symptoms. The genital ulceration reduces me to tears because I am incontinent. I had an endoscopy and the consultant took biopsies because I had what they thought was bleeding thrush right down my gullet into my stomach. It came back negative so I believe that is the Bechets also. I now have them in my anus which is incredibly painful. I am on 800mg of Hydroxychloroquine for the Lupus. I did try Colchicine but it gave me diarrheoa and stomach cramps. The only thing they prescribe for me now is Instillagel syringes to put on my mouth and genital ulcers to numb the pain. I am so very sorry that you are having such a terrible time and hope that the medication eases your symptoms x
I read others on here and feel I’ve nothing to complain about that others are worse. I often don’t post things.
But this wore me down!
I think the prednisone was smart thing to do and Wow the difference you feel.
I’ve just been laying down,sleeping and watching movies.
My dr says it’s too soon to see if the Plaquenil is working as I’ve only just started my 2nd month. If this isn’t working Doc will try the next drug or pump me to the next category of medications.
No only Colchicine, steroids and Hydroxychloroquine. I have been completely frustrated by my doctors.I was diagnosed with SLE ten years ago. My first Rheumatologist then diagnosed me with APS, Raynauds and Fibromyalgia. I changed Rheumatologist and he took me off the Hydroxy saying I had Bechets. I started feeling very breathless. Test showed I had severely enlarged lymph nodes around my heart and lungs and I was diagnosed with Lymphoma. I would not accept that diagnosis so got a second opinion. They said it was SLE, Fibromyalgia and Bechets. My current Rheumatologist veers between you have UCTD / Lupus / Bechets / Fibromyalgia. So sorry I cannot advise on other medication. I just felt your frustration and wanted to say hang in there x
I feel like my doctor is just starting to come around, I didn’t like how slow it took but I have to look at and respect the reason behind it. It’s not the greatest thing to be tagged with, but it’s like I told the doctors. NO I realize this but to not know or not be treated is Worse!!
I’m working on also finding ways to get any and all inflammation down. This flare has kept me from doing what I normally can. I had to stop my fish oil to do my colonoscopy and now have to slowly work back up to the dose I was on before. Also had to stop my supplements, which now I’m working on getting them back in as well.
I just haven’t been able to eat as well as I’d like to it’s just been whatever I can get in me and keep in. Pedialyte
Slushy was a lot of the days when I wasn’t able to eat much.
I do wish you well. Be very careful of over the counter supplements with the Hydroxychloroquine. My pharmacist will not give me anything unless he checks with the drug company. I self inject B12 and take cranberry for my bladder. Good luck x
My GP is an Arnp and practicing Functional Medicine so I only take what is suggested, for me it’s the best of both worlds. A lot of things I’ve done I have benefited from. It’s just waiting for things to all click.
My biggest comfort is this daily devotional I’ve been reading it’s like everyday it’s meant for me.
I wish you well and hope you find something that works, I would look into medications in the next category and take a list of them. This book by Joanne Zeis was very Good full of information.. My Gastro Doc read it and suggested I give it to my rheumatologist, so I bought one to give at my next appointment.
I have learned that you have to be your own voice and advocate with this disease, I have pleaded my case and proven my symptoms and as the rheumatologist doctor slowly come around I just get more issues so I think now things have become obvious and now it will get moving..
if not I will MOVE ON and find someone that’s gonna go after it and get it arrested!
I'm sorry to hear you've had such a bad time with ulcers & can totally sympathise. I ended up spending 3 weeks in hospital in isolation due to the severity & number of ulcers on my lips, in my mouth, throat & oesophagus. I couldn't eat for 3 months & could only sip water through a straw as even water burnt the ulcers. My blood cell counts were so low I was neutropenic. I had a nasogastric tube for a week to get nutrients into me & a pic line put in for my drugs to be given. Please let me know how you get on with your new meds as I would be grateful for any information to stop it happening again. All the best & I really hope you improve soon. XX
Thank you for responding. I am so sorry you had to endure that for so long. I don’t know how you could handle that. My family was persistent on me drinking so I would make icees with Pedialyte. (Like what you give babies)
It’s a thicker consistency so it felt little easier to swallow.
Are you on any medication?
I read your profile posts and I’m curious if your liver /toxins is better?
I’m guessing you are in UK?
Have you ever done the 23&me..
Health and Ancestry? When doing this you can get your genetic pathways.. I found out that I have a blockage in My Detox pathway and my body can’t detox on its own.
I have to help it by doing Epsom salts /baking soda baths, Hot yoga, sauna, and taking Glutathione.
Also that environmental toxins/food sensitivities/allergies can all play a role in health issues..it all causes inflammation. I have Been trying to work on getting that lowered.
I take fish oil as well.
I will let you know about the medications, I hope someday they will figure it out and find a cure or at least away for people to not suffer.
Thank you again for being so sweet and responding and telling me about you. I appreciate it..
Thank you so much for your lovely reply, it is so informative. No I've never done the 23&Me. My body doesn't absorb things so I have to have B12 injections. I have to take vitamin D & folic acid every day to try & get my body to get small amounts from the tablets. I have no immune system & a lot of problems with my blood counts. I have recently had a bone marrow biopsy to see if my body is making sufficient white blood cells & immune system is destroying them or if I'm not making enough. It's a long 8 weeks for the results!!! I was on methotexate for 4 years but they have now taken me off it, again because of the blood counts. My liver & kidneys do go into failure when I'm having a really bad flare up. Recent tests showed psorisis stage F2 of the liver. I live in the south of England & have a fantastic rheumy consultant. I am now under the Gastro team as well & they have been great. I'm also very fortunate to have a very sympathetic gp who has done a lot of reading up on Behcęts which is very helpful once you can get through the receptionists on the phone!! I'm housebound mainly due to a severe spinal injury but also because of the lack of an immune system. I do hope your ulcers are beginning to improve & the pain is easing. Take good care of yourself. XX
I wasn’t getting anywhere 4 years ago when my GP started practicing Functional Medicine so I told her I was on board to try anything to feel better.
It’s sad that we need medication but the medications can be detrimental to our health too. It’s picking the less of 2 evils. My doctors are all on board I need to do medication to get it under control and hopefully by continuing the Functional Medicine I will get it in remission.
I have been fighting this for 28/29 years but the flares were not as bad and less frequent. Meaning I would have bad flares and they would last 4-6 months and knock me down and then I’ll have little ones that I could push through. Since Nov 2017 it’s been constant and just goes from one area to the next and it’s been hard for the doctors to find cause it moves. Luckily I’ve kept good notes and photos and have gotten in for some of my ulcers so my doctors to physically see them.
I just am fatigued and feel like a weighted blanket is on me all day. I can literally feel and tell you where they are headed long before they break out. I also get stiff neck, cranial nerve flare and it effects My Trigeminal nerve and a lot of nagging to migraine headaches. I wear sunglasses indoors cause I’m light sensitive.
Do you have any food allergies/sensitivities??
Have you tried to eliminate any foods to see if you feel better?
Dairy,gluten, sugar,nightshades?
Some of this may help you as well but you would need to pay for some out of pocket tests. I know some of these doctors offer it but I’m not sure if you can ship to where you live as I’m in US but they may be able to.
I’m still learning things about this style of Healthcare but the more I learn the more it makes sense and I wish I started it earlier.
This link explains what Functional Medicine is all about:
If at anytime you don’t want to hear these things I’ve done please let me know, I tend to want to shout to the world when I get some relief cause I hope and pray it will help someone else!!
My liver count was higher and my doctor told me to SWEAT- either by Hot Yoga or Sauna or a
detox with the Epsom Salts bathes
2 cup Epsom salts 1/4-1/2 cup baking soda.
But to also make sure I’m staying hydrated!!!
She’s added some more supplements but she’s aware of my prescriptions and knows what I can/can’t take with them.
Oh and I found this mask that I was thinking of purchasing so I could be out in public more if my immune system was low.. (I hate the hospital type masks and this one looks cool and you can feel like you can breath better) I saw a lab worker wearing it and asked what it was called.
Hi. Thank you for your wonderful reply with so much information. I can so sympathise with you re the complete exhaustion & carrying a lead blanket round you. I usually sleep very well at night but wake up feeling shattered before I even get out of bed. Thank you for the links you have sent through I will definitely have a look at them. I do hope your ulcers are slowly improving. Take it steady - 1 step at a time. All the best. XX
Yes the prednisone worked I’m glad i did it. My ulcers so far have lasted 3/4 weeks at most but I usually have most pain before they come out and at the beginning of the outbreak. Not sure if it’s because I realize then that I’m not bat $h!t crazy because something shows to prove why I hurt or if I’m use to the pain.
I had magic mouth wash and straight lidocaine here to and I gargled with some Himalayan salts. Not sure if any of it helped. But I’m back to eating and drinking. Throat still sore and food burns at times.
I’ve read that a lot of people switch to a natural toothpaste.. which I find interesting and might try for awhile.
I’m glad you like the information i am sharing my feeling about this is if God gave me this disease then he knows I’ll help spread the word on things that I’ve found could work.
I’ve always been an open book type person and never afraid to share my experiences/life all in hopes it helps others. Everyone fights a daily battle we just don’t know what it’s like to be in there skin.
About the weighted blanket I heard something on those that they help people with anxiety and sleep.
I’m like for me it’s painful how the heck would that not cause anxiety 🤷🏼♀️
I have a hard time with my own body weight on my Mattress at night hurting me.
Sometimes I can’t lay on my left side and or back (cranial nerves flare) and achey hips. I have a hard time sleeping sometimes it’s ok and then it’s not when I’m in a flare that’s all I can do is sleep 10-12 hours easily. Wake up walk to couch and sleep more. My hardest part is not having energy. I can’t bathe/shower get dressed and run an errand without feeling like I could nap!
Before this I worked 4/10 hr days went to gym/yoga or walked would sleep 5/7 hrs or less and this flare November 2017 knocked me and I haven’t bounced back. Use to be I could push myself through it and I can’t even do that. I try sometimes but then I’m down for days.. it just
sucks, my son has a hard time with it and seeing me this way cause I was Super mom.. (single mom his whole life and I managed it all) I’m just thankful God waited for it to hit hard when he was old enough to handle it and not need me as much (he’s 25yrs now) you still feel bad cause they are always your babies!! I just hate that he sees me so weak, we use to go to gym and workout together so he knows what I was like before but I tell him I’ll come back better.. 😊
I admire you sharing your life experiences to help others. It's a disease that is virtually unheard of in England & my parents attitude for the first 4 years I had Behcęts was "snap out of it & get yourself going". If only!!!! It's only down to hospital admissions & listening to the consultants that they had to acknowledge that I really did have a serious illness. Like you I'm very grateful this disease didn't strike until my boys were older (they are 23 & 25 now) but life was very challenging when they were younger as my youngest has autism & my eldest has anaphylaxis. Although I was married I got no help from my ex-husband & I never thought I would say it but was relieved when I filed for divorce. My boys were guided by my parents views of this illness & as such did very little to help. However their views changed in March this year when I was rushed into hospital & the consultants told them how seriouslu ill I was & when I went in was close to death. That really shook them & they have had a totally different attitude since I came home. I'm longing to get through this period of total exhaustion so I can get back to my watercolour painting & crafting. I haven't been able to do any of it since last October. I'm pleased to hear your ulcers are improving & I do hope your energy levels begin to pick up. Keep smiling & spreading your useful information. XX
How are you feeling since the burst of prednisone?
For me, i just make sure to stay up on water, iced- and to eat a low carb, sugarfree diet.
sugar and carbs exasperates ulcers and inflammation for me. Please look into the keto diet. I typically eat low carb, but when I feel like im about to flare or I do have ulcers, Ill cut the carbs and put myself into a ketogenic state and it staves them off, or makes them smaller and/or heals quicker.
i used to be on colchicine, but gave since modifying my diet, have stopped it.
Hi I have had ulcers for over a year with no relief. I am miserable and just don't know what to do. My Dr is going to start me on otezla . I'm still waiting 3 weeks now for speciality pharmacy to send it to me. I am so depressed and tired of being sick.
Regardless they are miserable, I had those as well but for me it’s been the vasculitis which caused a cranial nerve flare which left me with Trigeminal neuropathy. That was all the time, and it would travel to mouth, gut, private’s then cycle over. But the cranial nerve flare has remained, that I get little relief from and my doctor has tried a lot of different things, it just needs to get controlled systemically. Hoping this will do it!
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