Advice about contacting my rheumatology doctor.

[kali9]

Hi everyone,

I saw one of the rheumatology doctors from my consultant'steam back in Septemar 24. We agreed to increase my methotraxate to 22.5mg. At the time of the appointment, we agreed that I would be seen again in three months.

In the meantime the increased dose made me sick so I had to reduce it back to 20mg. When I did not receive a follow up appointment, I contacted the rheumatology clinic and was told that the doctor I saw had left.

I was offered an appointment with the nurse but I did not take it because the nurse can not change my medication - I feel methotraxate is no longer helping me. When I first saw the consultant, she told me that if things got worse, I could email her secretary.

Should I email her secreatry now or just wait until i get an appointment? She had previously mentioned that she is willing to change my medication, but was concerned about my stomach issues ( I currentle inject methotraxate ).

I am struggling a lot-I cant sleep at night, I have terrible sweats, chest pain, burning eyes stiff and painfu hands. During the day, I have flu like symtpoms and feel freezing cold, cold hands (I do have Raynaud's) and other symptoms.

Thank you for any advice.

[StriatedCaracara]

Maybe getting an appointment with a nurse as offered, won't stop you getting a review appointment with a reheumatologist.

Maybe the nurse would facilitate this better than the receptionist, and getting to clinic is the most important thing then they will have actions to follow up on.

It is not always possible to guess.

It may be worth double checking on the rheumatoligist you saw last, who you have been told has left. Once I was given incorrrct information by a receptionist and somebody else with similar sounding name had left.

It might be that they work at another hospital, maybe local and within reach, or are on maternity leave.

Sorry I could not think of any more.

These are the things I would do.

[Sun19shine]

I would recommend you take rheumatology nurse appointment

They are v knowledgeable & can go speak to consultant & advise you further on medication dosage

Hope this helps as you def need some help/advice

[Jenfy34 in reply to Sun19shine]

I totally agree, I have had SLE for several years and have always found the specialist nurses very helpful and can fast track you to see consultant.

[cathie]

I would push to see the new person they may have a different perspective

[RosieA]

I suggest you contact the Consultant through their secretary as your consultant directed. Keep your email to the consultant concise and start by stating that you are contacting them directly as suggested by them during your last consultation. I email my consutlant through the secretary as this was agreed between us but I only do so as I am going through a difficult time finding a drug that I can tolerate. You appear to be in a similar situation. Worse case it bounces back and they ask you to go through the nurses, so nothing lost.

[kali9]

Thank you all for your replies. I have seen the nurse once and I mentioned that I would like to change my medication. She immediately said, 'But your liver is coping fine and your inflammation markers are fine'.

I used to work (I have since changed roles but still work in the same hospital, now in administration due to my lupus) with doctors in the muscosceletal clinic. Many patients were referred there by rheumatology for scans and a lot of them had normal blood tests but still experienced significant pain.

I remember one women saying she found it bizarre that even when her hands were visibly swollen, her inflammation markers remained normal. So I have come to realize that inflammation markers aren't always a reliable reflection of how active the illness is.

I think I will wait until after Easter and see if I get an appointment with one of the doctors.