[JayJayinIN]

Hi,
I'm 48 years old and just dx last week. The Rhuem. has prescribed a coarse of predisone, that has eased the terrible joint pain, and, plaquenil, which I hope will help with the fatigue and brain fog in time. He stated that I have a mild case. It just makes me wonder (and a bit worried) what a severe case would be like. I have to laugh, because most of the symptoms I have had the last two years I thought were a part of the start of menopause and getting older! Well, thanks for all the information and support found on this site.
Jay

 

[Katharine]

Hello Jay and welcome,

Yes, that term "mild case" is not greatly popular around here :lol: I too am supposedly one of those but did still end up off all work for a good while under doctor's orders!

Anyway, what they mean by that, is that you have no organ involvement, which is, of course a good thing.

Otherwise it sounds like the meds have been well explained to you and that you have a good attitude. Do be prepared for the plaquenil to take some time to work. It often needs 6-9 months to fully kick in but is a very worthwhile drug when it does as it is disease modifying and it reduces the frequency and severity of flares.

I hope you enjoy being here with us, feel free to ak any questions you may have,

Katharine

 

[Maia]

That term should never have been started - certainly does not describe the effects on an individual accurately! Welcome to the site, you've found a great place for information, empathy and support. The Plaquenil can kick in as early as a few months, but most find it takes 6 months. In my case it was 9 months before I noticed an improvement.

Have you tried any NSAIDs yet to help with the joint pain? Many here find one that offers relief to some degree at least.

Best wishes for a quick response to Plaquenil, and welcome again!

 

[JayJayinIN]

Thanks Katharine and Maia!

Yes, tried Celebrex and that didn't help. Taking Tramadol and Naporaxan eased it some. Happily surprised how quickly the predisone kicked in!

I am wondering what kind of protocal Dr.s use in monitoring lupus. My Rhuem. has me back in six weeks for a follow-up. I am guessing more blood work. Liver and kidney functions, urine tests, ect.??? I don't know what result numbers were on these last tests, just that the ANA, DNA strand tests were positve and liver functions were off.

Thanks for the warm welcome and feed back. It sure helps seeing how others cope with this roller coaster ride and that patience seems to be a key word to remember with this.

 

[Maia]

Follow up intervals and monitoring will vary depending on individual circumstances. If you had liver function tests that were off, then you will need more frequent monitoring until that settles. It could be part of lupus for you, or could be a separate autoimmune disease process, or could have been due to medication, viral infection, etc. It's good the doctor is keeping close tabs on you!

It sounds like you have found a good physician who is keeping a close eye on you and will be monitoring you appropriately. Many here are seen at most every 3-6 months, especially if they are relatively stable with respect to the major organ functioning.

 

[raggedyann1]

Jay,

Hello and welcome to The Lupus Site. I haven't been able to work in 5 years yet by lupus stuff falls into the "mild" category. I remember my early days I saw my rheumy every 2 weeks, that was back in 1989-93. My current rheumatologist sets my next appointment based on my health at the current appointment. I just saw my doctor this past monday and because I am so ill right now I will see him again in a month. The longest I have ever gone with him is 3 months.

You will also read posts from members in other countries and they sometimes have much longer periods of time between appointments. This is based on their health care systems and in some cases the shortage of doctors. Even in the USA now there is a shortage of Rheumatologists which is probably why we are seeing longer gaps between appointments. The important thing to me is the availability of my rheumatologist by phone and by email, as this assures me that I have access when I need it.

Even once we get stable blood work needs to be done on a regular basis. Mine gets done everytime I have an appointment.

Please feel free to ask all the questions you want, there will always be at least one of us that have experienced the specific topic.

Take care,
Karen