Spreading neuralgia

[Lotusblossom123]

Over the last 4 weeks I have had awful burning neuralgia type pain starting in my right eye socket and cheek then spreading to my scalp neck and now shoulders. My feet and whole body feels cold and getting spasms in my calf. It's almost as if I have been badly burnt. I have hashimotos and hyperthyroidism and on 125mg of levothyroxine. I am quite worried and have just requested a blood test but feel things have become worse in the last week. I also take stelara for Crohn's which makes me immunosuppressed.Any advice would be much appreciated.

[StitchFairy]

I was going to answer your other post about a rash but I can't. I think you should ring 111 and describe your symptoms to see if they can offer any advice as to what you should do.

[Jazzw]

Shingles potentially? But as StitchFairy says, it’s probably time to call 111 to get some advice.

[SlowDragon Ambassador]

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

do you always get same brand of levothyroxine at each prescription

Test TSH, Ft4 and Ft3

You also need to retest vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

As you have Hashimoto’s are you on gluten free diet

And/or dairy free

If not get coeliac blood test BEFORE trialing gluten free

[SlowDragon Ambassador]

rash definitely sounds like shingles

[Buddy195 Administrator]

I have hashimotos and hyperthyroidism… do you mean Hashimotos and hypothyroidism?

As others have said, I would definitely get checked by your GP, as the pain/ burning sensation you describe could be the start of shingles.

[helvella Administrator]

Lotusblossom123,

That sounds absolutely horrible.

The Patient Information Leaflet for Stelara has specific advice regarding side effects.

I have pasted that below.

Please note: When the PIL uses phrases like "straight away" - they really mean that.

Despite being very well aware of shingles, I certainly would NOT make any assumptions about what you are suffering from. Neither that it is shingles. Nor that it is not shingles. Anyway shingles near the eyes is itself an urgent matter.

Please seek urgent help. Definitely 111.

4 Possible side effects

Like all medicines, this medicine can cause side effects, although

not everybody gets them.

Serious side effects

Some patients may have serious side effects that may need urgent

treatment.

Allergic reactions – these may need urgent treatment.

Tell your doctor or get emergency medical help straight

away if you notice any of the following signs.

• Serious allergic reactions (‘anaphylaxis’) are rare in people taking

Stelara (may affect up to 1 in 1,000 people). Signs include:

◦ difficulty breathing or swallowing

◦ low blood pressure, which can cause dizziness or

light-headedness

◦ swelling of the face, lips, mouth or throat.

• Common signs of an allergic reaction include skin rash and

hives (these may affect up to 1 in 100 people).

In rare cases, allergic lung reactions and lung inflammation

have been reported in patients who receive ustekinumab.

Tell your doctor right away if you develop symptoms such

as cough, shortness of breath, and fever.

If you have a serious allergic reaction, your doctor may decide

that you should not use Stelara again.

Infections – these may need urgent treatment. Tell your

doctor straight away if you notice any of the following signs.

• Infections of the nose or throat and common cold are common

(may affect up to 1 in 10 people)

• Infections of the chest are uncommon (may affect up to 1 in

100 people)

• Inflammation of tissue under the skin (‘cellulitis’) is uncommon

(may affect up to 1 in 100 people)

• Shingles (a type of painful rash with blisters) are uncommon

(may affect up to 1 in 100 people)

Stelara may make you less able to fight infections. Some infections

could become serious and may include infections caused by

viruses, fungi, bacteria (including tuberculosis), or parasites,

including infections that mainly occur in people with a weakened

immune system (opportunistic infections). Opportunistic infections

of the brain (encephalitis, meningitis), lungs, and eye have been

reported in patients receiving treatment with ustekinumab.

You must look out for signs of infection while you are using Stelara.

These include:

• fever, flu-like symptoms, night sweats, weight loss

• feeling tired or short of breath; cough which will not go away

• warm, red and painful skin, or a painful skin rash with blisters

• burning when passing water

• diarrhoea

• visual disturbance or vision loss

• headache, neck stiffness, light sensitivity, nausea or confusion.

Tell your doctor straight away if you notice any of these signs of

infection. These may be signs of infections such as chest infections,

or skin infections or shingles or opportunistic infections that could

have serious complications. Tell your doctor if you have any kind of

infection that will not go away or keeps coming back. Your doctor

may decide that you should not use Stelara until the infection goes

away. Also tell your doctor if you have any open cuts or sores as

they might get infected.

Shedding of skin – increase in redness and shedding of

skin over a larger area of the body may be symptoms of

erythrodermic psoriasis or exfoliative dermatitis, which are

serious skin conditions. You should tell your doctor straight

away if you notice any of these signs

Other side effects

Common side effects (may affect up to 1 in 10 people):

• Diarrhoea

• Nausea

• Vomiting

• Feeling tired

• Feeling dizzy

• Headache

• Itching (‘pruritus’)

• Back, muscle or joint pain

• Sore throat

• Redness and pain where the injection is given

• Sinus infection

Uncommon side effects (may affect up to 1 in 100 people):

• Tooth infections

• Vaginal yeast infection

• Depression

• Blocked or stuffy nose

• Bleeding, bruising, hardness, swelling and itching where the

injection is given

• Feeling weak

• Drooping eyelid and sagging muscles on one side of the face

(‘facial palsy’ or ‘Bell’s palsy’), which is usually temporary

• A change in psoriasis with redness and new tiny, yellow or white

skin blisters, sometimes accompanied by fever (pustular psoriasis)

• Peeling of the skin (skin exfoliation)

• Acne

Rare side effects (may affect up to 1 in 1,000 people):

• Redness and shedding of skin over a larger area of the body,

which may be itchy or painful (exfoliative dermatitis). Similar

symptoms sometimes develop as a natural change in the type

of psoriasis symptoms (erythrodermic psoriasis)

• Inflammation of small blood vessels, which can lead to a skin

rash with small red or purple bumps, fever or joint pain (vasculitis)

Very rare side effects (may affect up to 1 in 10,000 people):

• Blistering of the skin that may be red, itchy, and painful (Bullous

pemphigoid).

• Skin lupus or lupus-like syndrome (red, raised scaly rash on

areas of the skin exposed to the sun possibly with joint pains)

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We'd love to hear back from you and know you are receiving proper treatment.

[Lotusblossom123 in reply to helvella]

Hi helvella,

I'm still here.

I have seen 3 GPS over the last week and nobody really knows what is going on. Neuralgia pain has spread from face, head, neck,upper back, arms and between fingers, thyroid is painful too.

GP said they could refer me to the pain clinic but I'd like no know why this has happened.

Bloods have now come back as abnormal. Ferritin, renal, B12 and lymphocytes.

Supposedly going on a cruise in 2 weeks .....a bit concerned.

[helvella Administrator in reply to Lotusblossom123]

The MHRA collects adverse reactions to medicines and publishes the statistics - here is the profile for USTEKINUMAB:

info.mhra.gov.uk/drug-analy...

I looked down the list and found a couple of things I thought could be part of what you are experiencing.

Nervous system disorders > Paraesthesias and dysaesthesias > Burning sensation, Hypoaesthesia

Eye disorders > Ocular infections > irritations and inflammations > Uveitis

The attached image is a screenshot of the section for Eye disorders.

You shouldn't have to crawl through this yourself. But known adverse reactions need to be considered properly.

And this is way, way outside my experience. Obviously anyone reading your story would like to help. But it can be very difficult to see how to do so.

Adverse reaction reports

[StitchFairy in reply to Lotusblossom123]

This is probably a long shot, but if you are taking any supplements, most especially B Complex, I would stop them for a couple of weeks and see if any symptoms start to subside.

[helvella Administrator]

Lotusblossom123,

Are you still reading?

Do let us know how your are getting on. Very concerned about you.