worried about flare...😫😫😖😖

[ava97]

today I am feeling hot in my body..feeling like I will catch fever...nd feeling pain in my arm,wrist and backside...don't understand wht I should do..recently visit my doctor..I am not fine inside I know.but I am afraid that is it the flare??? my doctor told me if I am not feeling ok he will increase my prednisolone dose...which I am afraid of.I dont want this.should I take parasitamol for this type of fever feeling..???

[MirkaMglosiek42]

He. Did you try detox with hot stone. It's helping mi a lot 👍

[ava97 in reply to MirkaMglosiek42]

sorry i did not understand what are u saying??detix in hot stone??sorry I couldnot get it

[Wendy39 in reply to ava97]

My understanding is that Hot Stone massage treatment is an holistic therapy, like reflexology and Reiki. I do not know if there are any proven health benefits to it, as I am not an expert. From what I know it is quite expensive, anything from about £45-£75 for me locally. I treat myself to reflexology when I can afford it, simply because it totally relaxes me. Stress is not good for people with lupus. We need to be able to relax, rest and recuperate when we aren't well. As far claims about detoxing your body, I am super sceptical. My understanding of the human body is that it detoxes itself, that is what your kidneys and liver etc do and from what I've read and documentaries on TV nothing actually speeds that natural process up. But drinking lots of water is good. But we'll see what others say.

[ava97 in reply to Wendy39]

thankz for ur reply now I understand ok I will serach about it in google and know much about it.

[Wendy39]

Sorry to hear you aren't feeling well. Would you mind telling us a little more? How long you've been diagnosed and what medication you are on? What dose of steroids are you currently on? And when you say doctor, do you mean Rheumatologist or GP? But apart from that, you could be flaring. You need lots of rest and good food. I'll answer further when you've told me about your drugs etc. Best wishes.

[ava97 in reply to Wendy39]

sorry for late replying..I was not feeling ok so I laid down on the bed...I have been diagonising last 9months...I am on 7.5mg prednisolone...and 200 mg hydroxychloroquine,10 mg methotrexate,vitamin d as a suppliment.nd folic accid once I a week after methotrexate taken.thatz it.I have said doctor to u he is a family doctor also.he is not rheumatologist..he is a medicine doc and also works in a government medical hospital as a doctor.and in our country most of the doctor didn't understand my disease first time...and when I was terribly sick and I coulnt even walk that time some doctor didn't understand the problem..my esr was 44that time..in our country there is much lackings about lupus symptoms.people don't understan the patient prblm and don't even think about it.but my family doctor understand the problem and I am on his charging...I keep visit him in one month just for checkup..but yes nowdays I am seeing swollen in wrist and much pain in arrm thhat I couldn't evenn raise my hands and there is no energy to do any work.and the horrible feeling is fatigue and hot feeling don't understand the problm.but I do nnot want to increase my steriods dose,feel like fully shattered in my inside sometimes feel that...how will I live in such a long life I am just 19 how will I manage this pain problem..I just feel that should die..cause I cant bear any pain...

[Wendy39 in reply to ava97]

No problem. I'm glad you got back to me. The extra info helps a lot. I'm sorry that you are feeling so ill right now. With the aches and pains and tiredness it could well be a flare. A lot of us with lupus use steroids or increase our steroids to help us through flares. The most I have taken is 20mg for 2 weeks and then tapered down, so 5 weeks in total and this had a very positive effect on my symptoms. Although we must always be aware that using steroids in the long term can have serious side effects. Depending on your weight, 2 x 200mg a day can be taken, I take one in the morning and one at night. As you are feeling so ill can you see your doctor sooner? I have never taken methotrexate but I really hope someone else replies with some helpful advice. Have you looked at the Lupus UK website! They have a lot of information about lupus, it's symptoms and treatments etc. Finally, although I am on 2 x 200mg Hydroxychloroquine and 3g MMF, I still get very tired. The fatigue is the most frustrating symptom for me. I wish there was a magic pill to cure it but there isn't. We have to learn what we can do and when we need to rest. Best wishes. Wendy

[Wendy39 in reply to Wendy39]

My typing mistake, when I said 2 x 200mg can be taken, depending on your weight, I meant the Hydroxychloroquine. If you are only taking 1 x 200mg a day, it is possible that this could be increased. Hydroxy does help with aches and pains. Plus some of these medications can take a long time to reach their full effect. When I was first diagnosed I was only prescribed hydroxy and it took about 12 months to get working completely. With hindsight I should have been given some steroids to help me too, but I think the doctor underestimated how low I'd been and for how long. Any more questions please ask.

[ava97 in reply to Wendy39]

thnkz for ur advice its really helpful for me.I m really upseet about my health but I know I have to live lke this way...😖😖😫😫...and don't know wht I m going to do..bt I dnt umderstmd why there is no permanent cure!!! if Tb has cure thn why lupus don't have.?? why we should take steriods for live tht has already put lots of weight on me..nd we know it has many side effects...

[Wendy39 in reply to ava97]

There are other drugs, rather than steroids, immune suppressant drugs - which are sometimes known as steroid sparing agents, such as Mycophenolate Mofetil, methotrexate and azathioprine. But yes, sometimes they aren't enough or aren't suitable and so steroids are the only option. I know it's a lot to take in, especially when you are so young. I remember feeling very alone and afraid when I was diagnosed but over time you will come to terms with it, in your own way. We all have to find a way of living our lives in the best way we can. Please stay in touch here. There are many people with years of experience who want to help and offer support. Best wishes.

[Cas70]

Sounds like a flare - take meds and rest, rest and rest - if not easing in a few days then see Doc.

[ava97 in reply to Cas70]

yes yesterday I got my blood test result and urine also.there is evrythng ok but in urine result there is some prblem with pus cells

don't know what is the main prblm bt today I wiill get my urine cuture test then I will visit my doctor.thnkz for ur advice..☺.but I have a confusion u know last month my esr was 13and this month 9and u know th minimum rank of esr was written in the report test was 15 thn if my esr was right..why I fel.pain in my elbow,arm, wrist andwwhy I feel fatigue??fever feeling.we know that lupus what means.too much aactive of immune sysstem.then if my white blood cless is lower than normal rank why I ffel pain/?

[Chanpreet_Walia LUPUS UK]

Hi Ava97,

I am sorry to hear you are not feeling well, have you spoken to your doctor about this?

Having flu-like symptoms such as a fever is a common symptom associated with lupus; it is advised you discuss this with your doctor to ensure it is not an infection. Muscle/joint aches and pains are one of the most common symptoms of lupus, we published a blog article on pain management which I hope will be helpful to you: lupusuk.org.uk/pain-managem...

[ava97 in reply to Chanpreet_Walia]

yes yesterday I got my blood test result and urine also.there is evrythng ok but in urine result there is some prblem with pus cells.even diabetes report is normal.creatinin isfine.

don't know what is the main prblm bt today I wiill get my urine cuture test then I will visit my doctor.thnkz for ur advice..☺.but I have a confusion u know last month my esr was 13and this month 9and u know th minimum rank of esr was written in the report test was 15 thn if my esr was right..why I fel.pain in my elbow,arm, wrist andwwhy I feel fatigue??fever feeling.we know that lupus what means.too much aactive of immune sysstem.then if my white blood cless is lower than normal rank why I ffel pain/?I didn't gett the idea.sorry I don't know evrthng nd I have curiosity to know so I asksked a silly question..☺☺

[Chanpreet_Walia LUPUS UK in reply to ava97]

Hi Ava97,

You don’t have to apologise for asking questions.

According to The Lupus Encyclopaedia, “Fatigue is sometimes a direct result of the systemic inflammation due to active SLE”. However, there are many other causes of fatigue such as: depression, stress, sleep disorders, anaemia and side effects from medication. It is suggested that if you are showing signs of fatigue when your lupus is controlled, you should ask your doctor to check you for other health complications like anaemia or fibromyalgia.

The encyclopaedia further states that “Most people who have active SLE have an elevated ESR; however, many do not. Some SLE patients who have no active disease can also have an elevated ESR for no apparent reason”. ESR varies and can be due to reasons other than inflammation like age, being female and anaemia. An ESR test is not sufficient alone, it needs to be performed along with other tests i.e. an ANA test. There is no real correlation between ESR levels and lupus.

Please keep us updated, all the best!

[ava97]

thnkz for your understanding my point of view..☺☺ and thankz a lot for your information I don't know much about this..I don't know much about fibromalagia.I don't have anemia.and hemoglobin is also fine my cbc,pbf,rbc report is also normall.I am tennsion free..but I feel pain in my left elbow,arm and wrist in horrible way and feel warm also..they feel like cracking.nd the most irritating part is my faitigue which is hampering my study.all my report is normal,lets see what my doctors say.tomorrow I will visitmy docotr,hope so evrrrythng will be ok.living with lupus is really difffucylt nowadays for me...😃😂😂😂