At last 1st rheumatologist Appointment & Colchicine

So after 2 cancelled appointments it finally happened. Went to local hospital to see rheumatologist for the first time. Went in with a very non positive attitude thinking will have a chat she might look at pics and then send me away with no more advice as to what and why I feel so unwell. But omg what a very positive appointment it was. Very nice doctor she read my GP notes and opticians letter, wrote notes symptoms, looked at the many photos and has said she is positive it is behcet's. Referring me to gynecologist, optimologist, dermatologist, had so many bloods taken to test for all. Wants me have neck brain mri but I'm clostraphobic, so not sure if that will happen unless they knock me out. And also look more into my GI symptoms as she says sounds like this is due to behcet's.Had xrays on lungs and sacroiliac Joint. And said to chase up the COE referral. She has put me on 500mcg twice a day Colchicine. Been on it a week now but get some other symptoms, so should I continue see if settles, not had as many genital ulcers but mouth very sore, eyes more sore, bad stomach pains, stools very light colour but more constipated , muscle and joint pain worse and last few days peeing more which hurts a little in back or will this all settle. Thanks Tracy

[gillianTS]

Hi Tracy

That sounds like a fantastic response to your first appointment and so happy the rheumatologist is referring you already and not waiting to see if colchicine cures all, I say this since this is how I was made to feel with my first rheumatologist, thankfully, but only due to the fact that colchicine had a toxic reaction to me 10 weeks in. Colchicine is a great drug for so many people just not me. Then I had to wait to get the changes in my body back to normal before I was prescribed prednisone which did not help me, I was then referred to another rheumatologist who put me on Azathioprine.

I would urge you to get your blood checked with your GP whilst taking colchicine, a liver and kidney function test, my GP practice ignored my other symptoms and requests to test my blood because the drug helped reduce the ulcers and they said I was not taking a large enough dose for the drug to make my joints ache in a totally different way as well as making me feel poorly, it was only when 10 weeks had gone by and my skin got hives all over, in places it appeared raw, I was immediately taken off colchicine, bloods checked, my liver GGT enzyme levels went over 300, the reference range here is 6-35... I then had weekly blood tests for weeks until my blood got back into the correct range. I was left with hair loss and without any medication for 3 months.

I would also suggest you go as prepared to your referral appointment as you have with the rheumatologist, the referrals I have been sent to have no experience of Behcet's, I decided quite a while ago to try and group my symptoms to the areas I was being referred, I typed everything up under headings such as Head, Oral, Joints, Muscles, Genital, Abdominal, Skin, Eyes etc. Under each heading I put what I experience eg.

Oral: ulcers, burning mouth, swollen tongue, raspberry tongue

I rearrange the list for every referral appointment I attend, putting there speciality at the top of the list, but I never remove anything from the list, leaving all the other headings and symptoms in place, and I give each consultant a copy of this list, I don't expect them to read everything there and then but they have no excuse for not being informed of how I am being affected, not just by Behcet's but my other diagnosed conditions which I feel are all linked.

In addition to the list of symptoms I also list whether I have had any diagnosis against any of those symptoms. And finally I list every test MRI, CT Scan etc I have had and the results.

Only on one occasion have I had the list given back to me.

Good luck with the rest of your appointments.

Gillian

[Hidden in reply to gillianTS]

Hi Gillian

Thank you for you reply and great advice. I hope you are having a comfortable time at present. What great advice regarding having different headings and putting all symptoms etc in that heading I am going to do this. I am so grateful I was reading all the advice from here otherwise I woukd have gone to my appointment with only a few visable symptoms. The photos and few doctor letters helped. On my rheumatologist appointment she asked if I had tried the prednisone when having a bad flare because I take this sometimes for my asthma I said yes helped with nerve pain but not ulcers. She also said I can call an advice line they have if side effects get horrible which only a week in they have, omg kidney pain this morning is awful so left a message to see what she says. Can I ask every time you have tests etc can you ask for copies etc they don't mind this.

Many thanks Tracy

[gillianTS in reply to Hidden]

Hi Tracy

Yes you can request copies of everything, you might have to apply after completing data protection forms, I have to for my GP practice and the NHS plus previous private health. In fact I have copies of all my MRI's, CT, clinical letters and blood tests, I know my GP practice must think I am a pest but they made mistakes in the past and I check everything now. You can request any or all of your records. At each consultation I requested copies of any clinical letters and test results they sent back to my GP and or referring specialist, often they say the letter will not say much and I just smile and reply that I keep copies of all my health records regardless.

I have seriously just had to gives copies of 9 MRI/CT CD's going back to 2008 to one of the NHS consultants because they were carried out privately and the NHS do not readily have access to these records without applying for them and since I have them I volunteered to save time I would copy to CDs, I was told they are going to upload them onto my NHS records...

Wow an advice line 😊 do you mind me asking which hospital you are attending? I am pleased you have called them about how you are feeling and I hope you can get some help soon with how to deal with this.

Take care and look after your body, collect a urine sample then call your GP practice and explain you have to drop off a sample to be checked out due to you starting new drugs, or do like I used to do, take the urine sample in all wrapped up with a note giving all the details, I now have my own urine strips and check my urine on a regular basis. Also drink lots if water at regular intervals to try and help your kidneys.

Gillian x

[Hidden in reply to gillianTS]

Hi Gillian

Wow you are so organised. Such great information thank you. The local hospital I am under is Dorchester. The consultant was so good and my GP recommended her aswell with this condition. So hoping it continues. I will start asking for copies if all as will come in handy.

Have a good day.

Tracy😉

[gillianTS in reply to Hidden]

My parents used to live in Dorchester, they ran a business on high west street, so I used to know it pretty well, lived there for around 6 months whilst changing jobs, I remember what was the new hospital being built there, lovely area 🙂

[Hidden]

Update..... Symptoms got very bad severe pain kidneys and bowels, mouth so painful. Left details advice line. Doctor called back said to come off colchicine straight away.