It’s all new to me!

[JCZW]

I was diagnosed with Lupus in August 2020 after many years of various conditions. I am currently taking 5mg of soluble Prednisolone and 200mg of Hydroxychloroquine. I’m struggling to cope and feel alone.

JCZW

[Spanielmadlady]

Hi sorry to hear you have been diagnosed with lupus and sorry you feel alone.you are far from alone and there are plenty of friendly caring people here with advice and experience to share on a very long rocky road.hydroxy takes up to 6 months to get the full effect and they then might add in another drug.as for steroids..I've been steroid dependent on normal tablets for 7 years so cant help on that front.what I would say though is dont rush to taper as you will suffer withdrawal symptoms. I always have 2 bad days after a steroid drop. I wouldnt worry to much about being on 5mgs...it helps keep inflammation in check until other drugs kick in.Please do reach out to us you will be made welcome and join in too...we share other things like hobbies,pets,funny stories and pics ... all helps to keep us smiling .sending you big hugs 🤗 x

P.s google the spoon theory x

[JCZW in reply to Spanielmadlady]

Thank you that really helps.

[BeeHoneyB]

Hi JCZW,

Sorry to hear your feeling low. You’re in the right place with lots of others who have Lupus and understand and share advise.

I have Lupus diagnosed over 15 years ago after huge battles with doctors to get listened to and not fobbed off. Had a fantastic Professor who taught me a lot about my condition how to manage it medications and going forward. He got me to a really good place of feeling confident with my condition and supported me through two successful pregnancies. Sadly he retired so a huge wealth of knowledge disappeared, other consultants listen half heartedly but not on a par with him.

Is it your symptoms that are making you struggle ? or side effects of medication or the pandemic? X

[JCZW in reply to BeeHoneyB]

Hi it's the symptoms of taking 5mg of soluable prednisolone a day . I have tried to taper off under the doctors guidance but due to taking soluable prednisolone the drop is from 5mg to 2.5mg and twice I have passed out. Taking 5mg of prednisolone a day makes me feel lightheaded and I occasionally shake.

[harmony2 in reply to JCZW]

Wow JCZW , that does sound hard. To reduce more than one milligram at a time makes me unwell, also. I need to stay at that tiny step down for several days before I can reduce again. I'm guessing you cannot break the kind you take. (breaking them is a little less than precise but cutting in half sounds rough!) Have you asked your pharmacist for any ideas?

In my opinion as a patient for many years, when possible, I do want to go down as soon as I can cope with it. (this is not always possible.)

When possible it can be good to reduce dosage because our bodies stop making its own when we stay on pred indefinitely. (I've been told this by two rheumatologists and two rheum nurses, and read in a few places that the human body makes about 7.5mg/day of a natural steroid but discontinues manufacturing this amount after you stay on pred. medication.) No one can tell me how long it takes for one's body to quit making its own. On the other hand, sometimes we MUST take pred. Please do keep diagloging with your rheumy or rhuematology nurses (find out if your hospital department has them--call the rheumatology secretary) and make joint decisions each time. If rheumatology nurses exist where you are, they can often be reached easier than the consultant. If they cannot answer your question they usually ask the consultant and call you again, in my experience.

I echo Spanielmadlady 's advice to read up on spoon theory. It's a truly practical and helpful concept. Without this I kept over-doing and crashing.

As far as absorbing and dealing with the new diagnosis and future symptom development I also recommend talking through your grief. It is a significant diagnosis which has numerous and far-reaching ramifications. You can do that here and with trusted friends. In my experience this is critically important. It's also my experience that you will find some people change the subject or cannot tolerate the serious and emotional content so it's important to find the people who can and cherish them. Pray Also use journaling and creative expressions when you have any energy to do so.

[svfarmer]

Hi I just wanted to say hi 🙋‍♀️ and welcome to the group - it’s a very friendly forum - it’s takes a while to come to terms with your lupus diagnosis- I was diagnosed 4 years ago and would say it took me about a year to come to terms with it all xx

[JCZW in reply to svfarmer]

Thank you it helps to know that there is someone I can talk to. Its pretty lonely especially with what is going on in the world.

[harmony2]

hi, JCZW . Well done seeking support. Keep reaching out and reading, etc.